Thalassemia Patients Friends Society Palestine

Annual Administrative Report

2016

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Table of Content

TPFS-Palestine Chairpersons Message ....................................................................... 3

First: Introduction on TPFS-Palestine ........................................................................... 4

1.1 Introduction on TPFS-Palestine .......................................................................... 4

1.2 TPFS-Palestines Vision ................................................................................... 5

1.3 TPFS-Palestines Mission ................................................................................. 5

1.4 TPFS-Palestines Strategy ................................................................................ 6

1.5 TPFS-Palestine Achievements in 2016............................................................... 19

Second: Patient Statistics in Palestine for 2016 ............................................................ 21

Third: TPFS-Palestines Activities in 2016 .................................................................. 23

Fourth: Partnerships and Agreements ......................................................................... 29

Fifth: TPFS-Palestines Participation in International and Local Conferences ........................ 30

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TPFS-Palestine Chairpersons Message

Our colleagues, volunteers and supporters of TPFS-Palestine

Peace be upon you,

Our journey has started in 1996 with the objective to realize the best interests of our society in
general, and the interests of thalassemia patients in particular. Thankfully, this social mobility has
become part of the Palestinian societys journey. TPFS-Palestines activities in 2016 have been
in line with its strategic objectives and previous annual plans.

TPFS-Palestines work in the previous year has revolved around improving the quality of life for
thalassemia patients, including the addition of medical services as well as promoting and
empowering patients.

TPFS-Palestine sees its future through the eyes of its patients, thriving to improve patients self-
confidence first and foremost, as well as to improve their confidence in their society and belief
that all components of the Palestinian society are by their side in finding education or job
opportunities suitable with their medical condition. Moreover, 2016 has seen greater involvement
of patients in the social awareness raising process, where patients have become educators on
thalassemia.

The direct contact from patients with the society to meet their needs as well as raise awareness
constitutes a great stride forward, it also contributed to promoting patients capacities as well as
integrating them in the society they are part of.

Promoting the quality of medical services is an accumulative, structured and continuous process
that does not stop at a certain point. The sun will not set on TPFS-Palestines work, as there are
constant achievements for the benefit of patients.

We wish our patients good health, we hope our future generations are free of thalassemia
dangers, and we wish our society better health.

Dr. Bashar Al-Karmi

TPFS-Palestine Chairperson

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First: Introduction on TPFS-Palestine

1.1 Introduction on TPFS-Palestine

Established in 1996, TPFS-Palestine has long sought to care for thalassemia patients through
raising their awareness on their medical, social and economic rights; improving the quality of their
life through enabling them to control the complications of their disease by developing the medical
services provided to them by the Ministry of Health and different health and social organizations;
mapping a number of medical indicators relating to their physical, psychological and social health;
and improving their capacity in accessing quality services capable of responding to their urgent
and future needs. This is done through support and advocacy with relation to the rights of
patients, networking with different institutions, providing the necessary tests and treatments, and
enabling patients to resume their life independently by building their capacity academically and
professionally towards independence and self-reliance to live safely in a supportive environment.

TPFS-Palestine is composed of a general assembly that includes patients, their families, and a
number of TPFS-Palestine volunteers; a youth council composed of university students
supporting patients rights; and a board of directors composed of thirteen members including
patients and volunteers. TPFS-Palestines efforts are supported by the National Committee
Against Thalassemia chaired by the Ministry of Health with the membership of other ministries
such as: Education and Higher Education, Social Affairs, Labor, Media etc. and a number of
NGOs, such as: The Union of Health Work Committees, Palestinian Medical Relief Society,
UNRWAetc.

TPFS-Palestine works in accordance with primary healthcare principles that focus on prevention
efforts and health promotion based on life skills and through cooperation with different sectors in
order to respond to thalassemia patients basic needs included in the Basic Law, Public Health
Law, Labor Law, Disability Law as well as other legislations issued by international organizations
such as the Universal Declaration of Human Rights, the Salamanka Declaration on Persons with
Disabilities, the United Nations Millennium Development Goals, and the Post-2015 Declaration,
among others. TPFS-Palestines interventions are based on several principles that constitute key
guidelines in work, including:

1. Health is a basic right for all;

2. Justice in the provision of services to all Palestinian patients in both the homeland and the
diaspora;
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 3. Enabling and qualifying patients is key towards improving their productive life;
4. Transparency and integrity in handling and managing TPFS-Palestines resources
reasonably and rationally;
5. Self-criticism is an integral part of the lifelong learning process;
6. Development is a quality of TPFS-Palestine based on the available research evidence;
7. Life skills and 21st century skills are outcomes that need to be empowered amongst all
TPFS-Palestines members and patients;
8. Self-reliance through continuous voluntary efforts is key for sustainability; and
9. Freedom of expression is part of the democratic developmental process to live in a civil
society.

TPFS-Palestine supports national efforts aiming at empowering Palestinians towards freedom and
liberation from the occupation and building the institutions of the independent state of Palestine.

TPFS-Palestine is a registered member at the Ministry of Interior since May 27th, 1996 under
registration number 2014, it is also a member in the Arab Group for Blood Disease Patients since
1997, and the Thalassemia International Federation (TIF) where Palestine is represented in TIF
by Mr. Anton Iskafi as member since 2006 and Ms. Jihad Abu Ghosh as voting member since
2000. TPFS-Palestine is also a member in the Union of Charitable Societies-Jerusalem,
Palestinian NGOs Network and the Child Protection Network.

1.2 TPFS-Palestines Vision

Thalassemia patients are able to actively work and participate in the society.

1.3 TPFS-Palestines Mission

Through cooperation with governmental and non-governmental partners, TPFS-Palestine seeks
to improve thalassemia patients quality of life by promoting their capacities and providing them
with their medical, social and economic needs that would enable them to actively participate in the
Palestinian society and contribute to development towards freedom and independence.

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1.4 TPFS-Palestines Strategy

Towards achieving its vision and mission, TPFS-Palestine works on several components and
strategies that are updated in accordance with the recent scientific and socio-economic
developments, such components and strategies include:

Prevention from the disease and its complications through social awareness and
partnership with institutions:

This strategy includes several patient-focused policies, procedures and activities as a key
component of delivering the health message to the society, particularly marginalized categories at
refugee camps, behind the separation wall and in Gaza Strip, in order to sustain TPFS-
Palestines achievements in preventing the birth of new patients in Palestine; introduce the
current and future needs of thalassemia patients and contribute to meeting them; network with
local and international health organizations; cooperate with universities and NGOs working with
youth; advocate for the adoption of awareness on thalassemia as part of annual plans particularly
at the Ministries of Health, Education, Media, Labor and Social Affairs; prepare educated patients
and their friends and provide educational material through different written, audio and visual
means of communication; and develop indicators to measure the awareness on thalassemia, in
order for them to become indicators that could be measured and enforced regularly.

Improving Patients Quality of Life

Quality of life means the living standards of people in both social and health environments.
Quality of life is measured by a number of objective indicators on the disease and access to
services, income and work, level of education and training, and the quality of available services in
the environment; and personal indicators that include the satisfaction and happiness of individuals
in their living standards.

This strategy highlights the patients health and its effects on other psychological, social and
economic aspects of their lives. Through this strategy, we seek to make patients enjoy a better
life in light of their disease by controlling the complications of the disease, preventing deterioration
of the patients health through improving the health care system and services, and cooperating
with patients through practices that enable them to control the complications of their disease.

In order to improve thalassemia patients quality of life, there are several components that must
be targeted and focused on to achieve the programs objectives. These components are: clinical

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indicators, health practices, socioeconomic reality, level of education and training, access to
services and the quality and provision methods of such services to patients.

Clinical outcomes relating to the disease and its complication depend on two key indicators in
thalassemia patients lives, which are the hemoglobin ratio and the iron ratio.

Based on these two indicators, thalassemia patients can have a better quality of life if the
hemoglobin ratio is maintained at an acceptable level > 9, and the iron is maintained at an
acceptable level as well <1000. Accordingly, a comprehensive system that focuses on patients
practices and improving the quality of health services to provide a long, healthy and productive life
for patients needs to be developed.

Empowering thalassemia patients and promoting their role in the society

This strategy involves a number of policies and procedures that allow patients to communicate
with their peers in the society in order to identify their potential, promote their confidence in
themselves and their surroundings, and promote their respect to themselves and belonging in the
society through integrating them and active involvement in a number of developmental programs
such as vocational training and education. This strategy also includes procedures to follow-up on
the education of all patients based on their needs and capacities, facilitating educational
procedures, and making up for opportunities lost due to their illness and treatment. This requires
close follow-up with the Ministry of Education to ensure all patients are enrolled in schools and
universities, and cooperation with NGOs to provide scholarships.

The strategy also includes the provision of vocational training for students who cannot access
universities through coordinating with the Ministry of Labor, the Ministry of Social Affairs and other
institutions. Moreover, it includes enabling patients to find a job that suits their qualifications and
skills by training them on searching and marketing their capacities in the labor market, assisting
them in employment in the public sector as part of the 5% guaranteed by the law to persons with
disabilities, and following-up on their involvement in TPFS-Palestines activities to promote their
role as role models for other patients.

Exchange expertise and network with institutions on the regional and international
levels

This strategy requires communication with Arab states to contribute to improving thalassemia
patients conditions and transfer the Palestinian experience as a successful model in the
prevention of new births with thalassemia. Communication mechanisms include creating joint
cooperation programs in which TPFS-Palestine assists in planning and implementation through

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the lessons learnt from the Palestinian experience, studying the conditions of patients in the
region and the world as well as the latest developments in prevention and awareness raising,
contributing actively in the activities of TIF, and highlighting the role of Palestinian patients in
regional participation in trainings, conferences and meetings with their peers in the world.

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Procedural Plan

1. Prevention from the disease and its complications through raising social awareness and partnership
with institutions
Goals Procedures and Activities Responsibility/ Resources/ Follow-up
Partners Estimate Budget
1.1 Maintain a Send awareness messages TPFS-Palestine Information Number of regular
zero percent on the importance of through social material. broadcasts, visits and
birth rate of new medical tests before media and other Media meetings.
thalassemia marriage though the media. means of media broadcasting plan.
patients by the Integrate prevention TPFS-Palestine Proposed lessons. Number of lessons that
end of 2017 methods of genetic in cooperation Training material. address genetic diseases.
diseases in school curricula with the curricula
development plans. center
Validate the medical tests TPFS-Palestine Transportation Report on the progress of
and registration procedures in cooperation tests
of persons carrying the with the Ministry
genetic disorder through of Health
field visits
1.2 Raise the Hold two two-day TPFS-Palestine Training material Workshop report.
awareness of 50 workshops on the rights of in cooperation on remedial Participants evaluations.
health workers thalassemia patients and with the Ministry protocol. Attendance sheets.

9
on the rights of remedial protocol. of Health Trainer. Training photos.
thalassemia Transportation,
patients and catering and hall.
treatment Conduct one field visit to TPFS-Palestine Field visit Visits report.
procedures by every health center to in cooperation template.
the end of 2017. understand the treatment with the Ministry Transportation.
procedures for thalassemia of Health
patients and prepare a joint
report with the Ministry of
Health.
1.3 Increase the Conduct information TPFS-Palestine Discussion Assessment report.
percentage sessions with tenth graders in cooperation material. Sessions reports.
awareness at a rate of one with the Ministry Educational film.
amongst tenth session/class/semester on of Education, Play.
graders on prevention methods of Health and Stationary.
prevention thalassemia. activities.
methods of Conduct drama activities
thalassemia to with tenth graders at 100
become 80% by schools
the end of 2017. (activity schools)
Conduct an electronic TPFS-Palestine Competition Participation percentage.
competition on prevention in cooperation Programming. Analysis of answers.
methods with the Ministry Announcement for Lists of winners.

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 of Education. the students.
Rewards (tablets).

Hold 4 summer clubs with Ministry of Remunerations for Number of participants.

the participation of 200 Education in activists. Activity report.
students and thalassemia cooperation with Stationary,
patients for two weeks. TPFS-Palestine. catering and
transportation.
1.4 increase the Conduct blood tests for Ministry of Test materials. Assessment report.
percentage of tenth graders to understand Education and Educational Test reports.
students who the genetic map. TPFS-Palestine brochures.
are aware that Hold awareness session at in cooperation
carriers of this a ratio of one session/class with the Red
genetic disorder on the genetic disorder and Crescent
are healthy the characteristics of Society, Medical
persons to 60% carriers. Relief and the
by the end of Union of Health
2017. Work
Committees
1.5 Increase
students Integrate marriage and TPFS-Palestine Skills based Follow-up on the
acceptance of medical tests in tenth grade in cooperation lessons adoption of the lessons in
future marriage science curricula. with the Ministry the new curricula.

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to a carrier of of Education
the genetic (Curricula
disorder to Center)
become 50%.
1.6give the
opportunity for Organize medical work days Universities, Cooperation Number of Donors
2000 university at 7 Palestinian universities TPFS-Palestine agreement.
students to in coordination with the and the Blood Contact
donate blood for Ministry of Education and Bank universities.
thalassemia Higher Education Brochures.
patients. Juice.

2. Improving patients quality of life

Goals Procedures and Activities Responsibility/ Resources/ Follow-up
Partners Estimate Budget
2.1 Improve Provide tests (hormones, TPFS-Palestine, Test material. Lists of tested persons.
clinical heart, Osteoporosis, and the Ministry of Transportation. Test results.
outcomes for other tests) for 800 patients, Health and Medicine.
800 provide the necessary partner health
thalassemia treatment and follow-up on organizations
patients by the improvement of patients.

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2017 Provide a database for TPFS-Palestine programming Present the results in a
patients and train health and the Ministry special report
workers on filling data. of Health
2.2 Prepare the Hold two one-day TPFS-Palestine Catering, Workshop report.
10 most workshops on the quality of in cooperation transportation and Attendance sheets.
important life with relation to with health facilitator
indicators on thalassemia for 50 organizations.
thalassemia participants in the West
patients quality Bank and Gaza.
of life in Conduct one field visit to TPFS-Palestine Field visit Visits report.
Palestine in every health center to in cooperation template.
different understand the treatment with the Ministry Transportation.
aspects by the procedures for thalassemia of Health
end of 2017. patients and prepare a joint
report with the Ministry of
Health.
Conduct a survey on TPFS-Palestine Survey tools. Results of the study on
thalassemia patients to in cooperation Two field the quality of life.
measure indicators on with two researchers.
health, social, psychological, researchers Data entry,
educational and economic analysis and
fields report.
Print and publish

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 the study.
2.3 Introduce Hold 20 workshops with TPFS-Palestine Discussion Workshop reports
80% of the patients and their parents to in cooperation material.
patients and introduce the concept of with educated Educational film.
their families on quality of life. persons and Stationary.
the concept of Implement recreational family health
patients quality activities that include organizations
of life by the awareness sessions for
end of 2017. patients and their parents.
Print a simple brochure on
the quality of life and explain
it to patients and their
parents.
Provide support in treatment, TPFS-Palestine Incentives Achievements report
material support and in cooperation
incentives to further improve with institutions
clinical outcomes.

3. Empower thalassemia patients and promote their role in the society

Goals Procedures and Activities Responsibility/ Resources/ Follow-up
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 Partners Estimate Budget
3.1 Increase the Meet the students needs TPFS-Palestine Treatment Accumulative record of
average number and motivate them, and with the Ministry sessions. student patients at
of general facilitate remedial education of Education Individual schools
education years (Education guidance reports.
for thalassemia guidance)
patients by two Public awareness sessions TPFS-Palestine Promotional Sessions report
years above the with patients families on with health brochure
current average the importance of education organizations
by the end of
2017.
3.2 Increase the Map students who pass Donors, Scholarships The number of persons
percentage of high school (Tawjeehi) and universities and enrolled at universities
thalassemia contribute to their the lending fund
patients enrolled enrollment at universities
at universities to through providing a number
become 50 of scholarships.
university Meetings with student TPFS-Palestine Transportation Meetings report
students by the patients to identify their
end of 2017. needs and means of
meeting them
3.3 Provide 20 Provide vocational training TPFS-Palestine, Scholarships for The number of trainers
job opportunities for 20 patients annually in the Ministry of training

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annually for coordination with the Labor and the
thalassemia Ministry of Labor, the Ministry of Social
patients Ministry of Social Affairs Affairs
and training institutions
Provide 30-hour trainings TPFS-Palestine Transportation, The number of trainees
all graduates on skills with the relevant catering, trainer and the training
related the labor market in institutions and training evaluation
coordination with IYF material
Coordinate with institutions TPFS-Palestine Employment day Number of jobs
to employ qualified patients and institutions

4. Exchange expertise and network with institutions on the regional and netional levels
Goals Procedures and Activities Responsibility/ Resources/ Follow-up
Partners Estimate Budget
4.1 Increase joint Draft three cooperation TPFS-Palestine Transportation
cooperation with agreements with societies in cooperation of
thalassemia and institutions involved in the Union of
institutions and thalassemia in Arab states Arab Societies
societies at the such as: Lebanon, Jordan
international level and Egypt.
Participation of 50 TPFS-Palestine Transportation and
members and patients in and TIF accommodation
international meetings on
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 prevention and treatment
methods of thalassemia,
and study establishing a
summer school in Lebanon.
4.2 Provide at Coordinate with Novartis TPFS-Palestine Transportation and The number of trainees
least 30-hour and other training accommodation
training to 10 institutions to provide the
volunteers and regional training
administrative Seek opportunities in TPFS-Palestine Transportation and The number of trainees
staff on different coordination with the accommodation
administrative Emirati Commission and
aspects on the other institutions
regional level.
4.3 Participate in Prepare and market an TPFS-Palestine Training The number of trainees
preparing and international proposal. in cooperation scholarships
implementing an Establish a regional with TIF
international committee to develop the
study involving implementation
surrounding methodology.
countries on the Form a local research
reality of team.
thalassemia in
the Middle East

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4.4 Hold the fifth Establish a preparatory and TPFS-Palestine Transportation and Conference
thalassemia scientific committee. with TIF accommodation recommendations
conference in Announce the conference.
Palestine in Prepare the conference
October 2017 components and collect the
relevant studies.
Allocate a local reward for
the best contribution
relating to thalassemia.

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1.5 TPFS-Palestine Achievements in 2016

1.5.1 Improved the health and remedial conditions of thalassemia patients through:

Issuing a decision on appointing full-time doctors to follow-up in thalassemia patients at

units that do not have doctors appointed by the General Administration of Hospitals at the
Ministry of Health;
Training medical workers at remedial units on the remedial protocol in the West Bank and
Gaza as part of the patients quality of life program in cooperation with the General
Administration of Hospitals and through support from the Arab Fund for Economic & Social
Development. The training targeted 37 medical staff at public hospitals, including 21
doctors treating thalassemia patients at remedial units in the West Bank and Gaza;
Building a remedial unit for thalassemia patients at Al-Shifa Hospital-Gaza under the
auspices of the Palestinian Ministry of Health through funding from Ghosh Gamily, and
equip it through funding from PalTel;
Providing 30 blood filters for thalassemia patients through a donation from the Emirates
Commission for Charitable Work;
Conducting heart test for 400 patients from different districts and following-up on their
conditions;
Conducting Osteoporosis test for 156 patients from different districts, and additional
patients will be tested;
Conducting hearing tests for 200 patients from Gaza in cooperation with Atfaluna Society
for Deaf Children, and 50 patients from Ramallah in cooperation with Medical Relief
Society;
Purchasing 85 pumps for thalassemia patients in the West Bank and Gaza as part of the
patients quality of life program that is funded by the Arab Fund for Economic & Social
Development; and
Creating a basic database for thalassemia patients in the West Bank and Gaza.

1.5.2 Improved the psychosocial conditions of thalassemia patients through:

Training 40 patients educated on health issues from the West Bank and Gaza on
communication skills and preparing them as trainers;
Implementing a psychological support program as part of the patients quality of life
program in the West Bank and Gaza in order to promote skills in facing the daily life

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 pressures, assist patients in expressing their opinions, appreciating themselves, and
promote their self-confidence; and
Implementing a number of recreational activities for patients in the West Bank and Gaza in
cooperation with a number of institutions, such as Warm Home Society and Jerusalem
Pulse Group.

1.5.3 Improved the educational conditions of patients and found job opportunities as follows:

73 patients from the West Bank and Gaza received BA degrees in different
specializations;
Job opportunities and small projects were found for 15 patients;
Temporary job opportunities were created for patients through preparing and training
persons on health issues and allocate them to raise awareness at schools and universities
on thalassemia as part of the patients quality of life project;
4 coordinators in the West Bank and Gaza were allocated to work under the patients
quality of life program; and
Job opportunities were created for 6 patients from the West Bank and Gaza in cooperation
with the Palestinian Employment Fund.

1.5.4 Developed and promoted TPFS-Palestines relations at the local and international levels,
and new partnerships were created:

TPFS-Palestine received Sheikh Sultan Bin Khalifa International Thalassemia Award for
the Distinct Society at the Arab Level category;
Anton Iksafi continues to represent TPFS-Palestine at TIF in Cyprus;
An agreement was signed with the Medical Relief to conduct heart tests for 50 patients
from Ramallah District, and heart and ferritin tests for 100 patients from Gaza;
A cooperation agreement for psychological support for thalassemia patients was signed
with Imar Society;
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 An agreement was signed to conduct a scientific research entitled Genetic Diagnosis of
Beta Thelassemia in cooperation with Al-Jawda Center for Medical Labs at Al-Quds
University;
A retrospective study on thalassemia treatment and complications in Palestine in
cooperation with the Life Sciences Faculty at Al-Najah National University;
TPFS-Palestine has become a member in the Local Council for Employment in
cooperation with the Ministry of Labor in Tulkarem and Ramallah; and
An agreement was signed with the Deaf Society to conduct hearing tests for patients in
Gaza.

Second: Patient Statistics in Palestine for 2016

The number of recorded thalassemia patients in Palestine reached 887 in the West Bank and
Gaza1 in 2016 as shown in the following table:

District No. of Patients

West Bank 675
Nablus 211
North

Tukarem 65

1
The number of patients includes the patients who had bone marrow transplant and patients abroad
21
 Jenin 216
Qalqilia 76
Toubas 22
Salfit 28
Ramallah and
Center
71
Jerusalem
Jerichp 5
Hebron 205
South

Bethlehem 1

Gaza Strip 301

Total 768

According to Dr. Bashar Al-Karmi, TPFS-Palestine chairperson, the number of newborns with the
disease has decreased to less than ten cases a year as of 2005. The number of new cases
almost reached zero in 2013, and the majority of districts maintained this level until the end of

22
2016, however, there were some recorded cases as a result of marriage prior to conducting the
medical tests.

Third: TPFS-Palestines Activities in 2016

3.1 Honoring ceremony for the TPFS-Palestines founding committee and board of
directors

TPFS-Palestine held an honoring ceremony for the founding committee and board of directors of
TPFS-Palestine after it received Sheikh Sultan Bin Khalifa International Thalassemia Award for
the Distinct Society at the Arab Level category in 2015.

TPFS-Palestine received this award, which is an accomplishment for Palestine, due to the joint
efforts of the successive founding committees and volunteers since 1996. TPFS was able to
achieve its target of zero births with the disease in 2016, as the prevention of new births would
save Palestine around half a million dollars. It is estimated that 150 million dollars were saved
since 2000 due to commitment to testing before marriage. Such results would not have been
achieved without the strong partnerships between TPFS-Palestine, Palestinian CSOs and
UNRWA.

The steps taken by TPFS-Palestine since its establishment were highlighted, including raising
awareness and combatting thalassemia through cooperation with the different ministries,
particularly the Ministry of Health, to provide the necessary medication and treatment for patients
for free, as well as providing patients with free health insurance. TPFS-Palestine also worked
with the Ministry of Waqf and the Bureau of the Sharia Courts Chief Justice to issue binding
instructions to conduct medical tests before marriage, because Palestine has become the first
Arab country and the second country in the world to reach zero new births with thalassemia.
TPFS-Palestine is currently focusing on improving the patients quality of life.

3.2 Th project for training and educating thalassemia patients and meeting their medical
needs

The training and education project implement in the West Bank and Gaza was funded by the
Arab Social & Economic Development Fund. The project aimed at empowering thalassemia
patients to become qualified and active citizens capable of community participation and enjoying
excellent physical and psychological health through providing them with life and professional
skills that open future prospects and opportunities for them.

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The project focused on raising the awareness of thalassemia patients on their health, social and
economic rights; improving the quality of their life through enabling them to control the
complications of their disease by raising their awareness on health practices to handle their
sickness; developing the medical services provided to them by the Ministry of Health teams and
different health and social organizations; and provide the necessary medical equipment and
psychological support for them.

In its activities, the project targeted youth and the local community as a whole through
implementing educational activities such as lectures, competitions and creative arts activities that
carry an awareness raising message at universities, schools and community centers in
partnership and cooperation with governmental organizations, non-governmental organizations
and the private sector. Moreover, the project conducted specialized studies on thalassemia and
prepared indicators to measure patients quality of life, among other things. Following are the
key activities implemented by TPFS-Palestine as part of this project:

Training educated patients in the West Bank and Gaza Strip

The training targeted 45 patients in the West Bank and Gaza. It aimed at building the capacities
of patients for them to be able to deliver a social message on thalassemia through participating
in health education at schools and local community institutions. Moreover, it aimed at integrating
patients in their community, involving them in social activities and giving them an actual role in
raising public awareness on the disease. In addition to the overarching objective of TPFS-
Palestine to increase the level of knowledge and awareness on thalassemia.

The training was implemented on three stages throughout the year, where the targeted
categories were involved in a 40-hour training on medical/health issues relating to thalassemia,
the remedial protocol and the use of the pump; the patients quality of life, which included
practices, nutrition and reproductive and sexual health; and life skills, which included lobbying
and advocacy, presentation skills and efficient communication skills among other topics. The
second phase of the training was that the participants give a practical training before a panel of
judges that includes the trainers in order to select the educated trainees. The third phase was
that the selected educated trainees would provide educational lectures at schools, universities
and community centers, where the number of educated persons was 20 in the West Bank and
19 in Gaza Strip.

One of the training outcomes was the development of a training program for 39 educated
persons on health issues in the West Bank and Gaza at schools and local community institutions
at a rate of 7 lectures for each person.

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Psychological Support for Thalassemia Patients in Gaza

The psychological support activities in Gaza targeted 11 groups including 109 child and young
patients and their mothers, in addition to targeting 300 patients and their families in the last day
of the activity.

The psychological support sessions mainly adopted group therapy approach, while taking into
account individual interventions for certain cases as well as family counseling at the request of
mothers. the sessions were designed in accordance with objectives in line with the psychological
needs of patients and age groups. After the sessions were concluded, an open day was
organized with the participation of patients and families, where the activities, skills and positive
effects of the sessions on patients and their families were highlighted.

The psychological support sessions contributed to improving mental health for thalassemia
patients and their families, promoting their skills in facing daily life pressures, providing them with
skills to deal with and adapt to psychological pressure as well as skills to create social relations,
and promoting their self-confidence and attempting to change their melancholic feelings.

25
Patients Quality of Life Project Training Doctors in the West Bank and Gaza

The training targeted 37 doctors from public hospitals in the West Bank and Gaza, including 21
doctors treating thalassemia patients at remedial units.

The training program included several specialized topics on remedial follow-up of thalassemia
patients, including: classifying blood diseases and thalassemia, diagnosis, and safety of blood
transfusion; treatment of thalassemia patients excess iron (accumulated); in addition to
addressing the key complications of the disease and how to treat them, including osteoporosis,
hormone problems, problems with endocrine glands and heart problems and their relation with
thalassemia.

The program also included psychosocial support from a medical perspective, and nutrition and its
relation with thalassemia in terms of the patterns and practices that patients should follow to
reduce the complications of the disease in order for patients to enjoy good health and live a
normal life.

The training contributed to increasing the knowledge of health workers on the importance of
periodic remedial follow-up for thalassemia patients, improving the quality of medical services
provided to patients at remedial units, and stressing on the importance of a sustainable health
care system for all patients at public hospitals.

Summer Camp in the West Bank and Gaza A Step Towards Better Health

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As part of the project for education and training thalassemia patients and meeting their medical
needs, TPFS-Palestine, in cooperation with the Ministry of Education the General
Administration for School Health, organized a summer camp A Step Towards Better Health in
the West Bank and Gaza through establishing groups for health education composed of school
students and thalassemia patients to implement different health activities. The summer camp and
its numerous recreational, educational and training programs and activities constituted an
opportunity to gather all students who care for thalassemia patients, strengthen relations between
them, and understand thalassemia, its symptoms and prevention methods in order to combat the
disease and raise the awareness of school students on thalassemia and other genetic diseases.

The summer camp in the West Bank targeted 6 public schools/ 3 directorates from the north,
center and south at an average of 7 students per school, in addition to 17 thalassemia patients.
The summer camp in Gaza targeted 100 students including 40 patients.

The camp included several activities, mainly communication, self-appreciation, problem solving
and decision making, it also included psychological support, motion games and drawing. As well
as introducing thalassemia, its symptoms and prevention methods, and the importance of testing
before marriage.

3.3 The International Day for the Solidarity with Thalassemia Patients

TPFS-Palestine celebrated the international day for the solidarity with thalassemia patients, which
takes place on the eighth of May annually, in Jenin under the auspices of the governorate and in
cooperation with the Palestinian National Security Forces and Military Medical Services. This
years event was entitled Improving Thalassemia Patients Quality of Life. 500 patients and their
families from all districts participated along with a number of partner institutions.

This international day was characterized by the largest participation possible from young patients
through organizing the co-existence camp which was held in (Al-Saadeh Forest), owned by the
National Security, aiming at integrating thalassemia patients in all institutions of the society. The
camp included eye tests and dental tests by med-students from the Arab American University
and Military Medical Services, as well as lectures on communication skills and first aid and some
trainings on order, discipline and time management. The camp was concluded with a graduation
ceremony and honoring of co-existing patients with active participation from the National Security
Forces and Military Medical Services who supported and cared for the patients throughout the
camp.

Many banners were raised announcing the celebration of the International Thalassemia Day. The
opening ceremony was held at Jenin Governorate Hall. After that, a parade started in which
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young thalassemia patients and their families; TPFS-Palestines management, staff and
volunteers; a governmental institutions, NGOs and private organizations participated. There was
also active participation from the National Security Forces, Military Medical Services, the
Palestinian Red Crescent Society, the Emirates Charity Work Commission, and supporters of
patients. The parade was concluded by heading to Haddad Resort, where a recreational program
was held for patients and their families as a gesture of hope and optimism, and to bring joy to
patients.

Thalassemia patients in Gaza participated in a community parade. Balloons bearing TPFS-

Palestines logo were released and a mural was drawn by children expressing themselves on
their cause. One of the most important activities of this day was the scientific day which was held
in cooperation with the Laboratories Department and Blood Bank at Al-Shifa Hospital; this day
revolved around thalassemia from medical and genetic perspective, quality of life and reading
CBC tests. This event targeted hematology doctors, nurses, lab technicians and pharmacists.

3.4 Charitable Iftar for Thalassemia Patients

TPFS-Palestine held the annual charitable Iftar for thalassemia patients under the slogan
Ramadan Al-Khair Campaign. The event was attended by around 300 patients, families of
patients, and supporters of thalassemia patients. This event was held to stress on the importance
of social solidarity, which is considered a religious and national duty to stand in solidarity with
thalassemia patients and their parents.

The events program included several activities including an auction that was opened by Mr.
Ahmad Ayyash to collect donations for thalassemia patients by presenting artworks for the
attendees to purchase. TPFS-Palestines chairperson extended his appreciation on behalf of the
board of directors and patients.

TPFS-Palestine distributed food packages donated by the Charitable Work Commission UAE,
and educational gifts to child patients from TPFS.

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Fourth: Partnerships and Agreements

4.1 Agreement between TPFS-Palestine and Al-Jawda Center for Medical Labs-Al-Quds
University

TPFS-Palestine signed an agreement with Al-Jawda Center for Medical Labs-Al-Quds University
to conduct a scientific research entitled Genetic Diagnosis of Beta Thalassemia as part of the
project for training and educating thalassemia patients and providing medical equipment which is
funded by the Arab Fund for Economic & Social Development. The research aims at mapping the
number of beta thalassemia patients in the West Bank and re-diagnosing them to reach a final
and affirmative diagnosis by using traditional diagnosis methods and genetic tests. Thus, the
characteristics of beta thalassemia in Palestine would be identified, which in turn would facilitate
finding an appropriate diagnostic and remedial protocol for those patients.

4.2 Agreement between TPFS-Palestine and Atfaluna Society for Deaf Children

TPFS-Palestine signed an agreement with Atfaluna Society for Deaf Children, which is the
second agreement between the two. Ms. Jihad Abu Ghosh, board member at TPFS-Palestine,
signed the agreement on behalf of TPFS, while Mr. Naim Kabajah, Director of Atfaluna Society,
signed on behalf of the society. The agreement was on conducting hearing tests for thalassemia
patients in Gaza.

4.3 Agreement between TPFS-Palestine and the Palestinian Medical Relief Society

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TPFS-Palestine signed an agreement to conduct heart tests in cooperation the Palestinian
Medical Relief Society for 50 patients from Ramallah and Al-Bireh. The agreement will stand for
one year. It is worth noting that the Palestinian Medical Relief Society has been a TPFS partner
since its establishment through providing care for thalassemia patients with relation to heart
diseases and raising public awareness on thalassemia.

4.4 Agreement between TPFS-Palestine and the Palestinian Fund for Employment

The Palestinian Fund for Employment and Social Protection of Labors signed an agreement with
TPFS-Palestine to implement a project aiming at creating job opportunities for direct employment,
create expertise and build capacities in the West Bank and Gaza as part of the human resources
development program. It also aims at developing the infrastructure of local communities to reach
marginalized and vulnerable categories and assume social responsibility with them through
targeting unemployed thalassemia patients who graduates from universities, higher education
institutes and professional training centers in order to provide six-month job opportunities for
them. This contributes to improving the socioeconomic conditions through providing temporary
income for a dignified life. This employment period would also be allocated to train and qualify the
beneficiaries by providing them with the necessary practical experience that would qualify them to
obtain permanent jobs, or give them experience to enter the labor market. This would lead to limit
the high unemployment rates amongst young university, higher education institutes, and
professional training centers graduates to a certain extent. This agreement is the result of the
Palestinian employment day for thalassemia patients held in May 2015.

This project is part of employing and training 55 unemployed thalassemia patients in Gaza Strip
and the West Bank for a period of six months; and it is part of the human resources development
program, infrastructure development of local communities, as well as improving the work
environment and economic, social and psychological conditions of thalassemia patients and
contributing to opening job prospects for them.

Fifth: TPFS-Palestines Participation in International and Local Conferences

5.1 TPFS-Palestines participation in Amman International Conference

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5.2 TPFS-Palestines teams participation in the fifth conference for Palestinians in the diaspora
under the auspices of his excellency Prime Minister Rami Al-Hamdallah

5.3 TPFS-Palestines participation in the Palestinian 9th International Conference of Laboratory

Medicine

Sixth: TPFS-Palestines Publications in 2016

TPFS-Palestine published the 28th issue of the Amal Journal under the slogan Towards
a Better Quality of Life for Thalassemia Patients, which is a periodical journal that
addresses TPFS-Palestines events and activities.
CBS Chart.
Brochure on Thalassemia.
Brochure on TPFS-Palestine.

Success Stories

Treatment Journey

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Aseel Smour, born in Jenin, discovered she had thalassemia. She and her family adapted with
the disease. She started her treatment journey with blood units, which are the fuel of her life, and
iron breaking device that has become her companion. She is destined to this fate, and her
journey continued till she was seventeen. The disease was not an obstacle in her life, as she
excelled at school. Meanwhile, and after suffering and waiting for 17 years, she got covered for a
bone marrow transplant. She stopped quit highschool (tawjeehe) to prepare for her treatment and
the bone marrow transplant.

Three years ago, she underwent the bone marrow transplant and
received chemotherapy for 15 years; she went through all the side
effects including hair loss and pain. However, she thankfully
passed this phase and was healed. She now has a life free of
blood transfusions and hospital equipment, and she can continue
her studies. She is now a university student, and chose to study
media to deliver her message and strong will to all people.

Zeina Al-Hbail

Zeina is a student at Al-Hurriya School, born in Gaza in 2009, she discovered she had the
disease when she was four months old. Zeina is a child to a family composed of four persons.
Her family lived with the disease and followed-up on their child regularly conducting all the
necessary treatments. At the age of three, she started taking medication, Desferal, to remove iron
from her body, which accumulates due to
blood transfusions.

Zeina is good at her studies. She is a well

behaved and articulate child; she is loved
and always gets attention for her
expressions and actions that show a strong
personality.

Zeina is waiting to find a match for a bone

marrow transplant, after failing to find a
match in her family. She is well aware of
the operation and understands not finding a
match. She is also convinced that her
disease is difficult, but she awaits and
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hopes to find a match. Zeinas family is constantly willing to support and assist her, and they treat
her like a healthy person capable of achieving and performing her duties within the family.

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