15th TIF International Conference for Patients & Parents
Thalassemia is one of the most common genetic blood disorders known to mankind. Estimates indicate that at least 12 children suffering from Thalassemia are born every hour around the world and that with the presence of more than 490 million carriers of the genetic disorder worldwide, presents significant pressure on the medical resources, social and economic development of many countries due to the lack of presence of a comprehensive prevention program for Thalassemia.
The 15th TIF International Conference for Patients & Parents, will include an informative patients program, whereby patients and their families will be able to interact, discuss and gain insight from a panel of highly respected international and regional faculty.
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Italian Ttanslation
Greek Translation
Turkish Translation
German Translation
Arabic Translation
French Translation
*The translations were up-to-date at the time of upload.
Detailed Program
*survey will be distributed two months prior and analysis of the findings will be presented in the course of the capacity building workshop. *17:00-19:00hrs – Expert Patients Program Training Workshop (by invitation only)
DAY 1 – Sunday, 20 October 2013
08:30-16:00
REGISTRATION
16:00-16:30
Opening Addresses
– Welcome Message – Panos Englezos, President TIF
– Milestones and Current Initiatives of the Thalassaemia International Federation – Dr. Androulla Eleftheriou, Executive Director
16:30-17:50
Keynote Session
18:00-19:00
Welcome Refreshments
19:00-21:00
SITA Award Ceremony
DAY 2 – Monday 21 October 2013
SESSION 1
Chairpersons: M.D. Cappellini / Shakeela Basheer / George Makris
08:30-08:40
What is Thalassaemia? - Angelo Loris Brunetta
08:40-08:55
Natural History of Thalassaemia - Maria-Domenica Cappellini
08:55-09:05
Blood Adequacy - Riyad Elbard
09:05-09:30
Blood Transfusion Therapy and Safety - Farrukh Shah
09:30-10:00
Heart and Thalassaemia - Malcolm Walker
10:00-10:20
Iron Chelation Therapy - Farrukh Shah
10:20-10:30
Adherence to Iron Chelation Therapy – Michael Angastiniotis
10:30-11:00
Coffee Break
11:00-11:30
Quiz: multiple choice questions based on the sessions presented as above
Facilitators: Photis Eliades / Farrukh Shah
SESSION 2
Chairpersons: Riyad Elbard / Paul Telfer / Amna Alwali / Francois Houyez
11:30-11:50
Quality of Care- Reference Centres - Kate Ryan
11:50-12:10
Quality of drugs and its role in safety and adequacy of therapeutic protocols - Mahmoud Hadipour Dehshal
12:10-12:30
Medicines Supply Shortages in economic crisis and globalisation of medicine production - Francois Houyez
12:30-12:40
Questions and Answers
TIF’s 1st Patients/Parents Associations’ Capacity Building Workshop
Coordinator/Facilitator: Durhane Wong-Reiger
Chairpersons: Manal Shoukry / Mahmoud Hadipour Dehshal /Nicos Kalogeropoulos
12:45-13:00
Introduction – Objectives of the Workshop - Androulla Eleftheriou
13:00-14:00
Lunch Break
14:00-14:30
Current status of capacities/competencies of associations for advocacy in haemoglobinopathies –survey analysis* - Androulla Eleftheriou / Michael Angastiniotis
14:30-15:00
International collaboration today more relevant than ever - Durhane Wong-Rieger
15:00-15:20
Social Media- a platform to accelerate and strengthen advocacy - Michael Michael
15:20-15:40
Q & A on mobile applications – patients’ perspective – Androulla Eleftheriou
15:40-16:00
Understanding the Non-Transfusion Dependent Thalassaemia population – New advances in
the diagnosis, management and prognosis - Shahina Daar
16:00-16:30
Coffee Break
16:30-17:10
Workshop: Break out – Round table sessions
Chairpersons: Aggie Michael / Costas Papageorgiou
1.Quality of Drugs - Mahmoud Hadipour Dehshal
2.Government/official collaboration and support - Durhane Wong-Rieger
3.Creating strong infrastructure/fundraising programs, setting goals and strategic plan for the NGOs - Androulla Eleftheriou / Angelo Loris Brunetta
4.Apps for adherence and monitoring-useful? - Michael Michael
5.Parents support in building patient and NGO capacities - Romaine Maharaj / Khalida Khammas
6.New advances in Non-Transfusion Dependent Thalassaemias - Shahina Daar
17:10-18:00
Reporting of Round Table Discussions (by the coordinator of each round table)
18:00-18:15
Conclusion / Way Forward / Closing remarks - Androulla Eleftheriou / Durhane Wong-Rieger / George Constantinou
DAY 3 – Tuesday 22 October 2013
SESSION 3
Chairpersons: Amal El Beshlawy / Omran Abdulla / Fiori Kousta
09:00-09:20
Infections in Thalassaemia - Christina Stephanidou
09:20-09:40
Viral Hepatitis in Thalassaemia - Amal El-Beshlawy
09:40-10:00
How do we Cope with Antiviral Treatment- A Patient’s Perspective - George Constantinou
10:00-10:20
Dental Care in Thalassaemia - Navdeep Kumar
10:20-10:30
Interactive Discussion
Facilitator: Photis Eliades
10:30-11:00
Coffee Break
11:00-11:40
Quiz: multiple choice questions based on the sessions presented as above
Facilitators: Photis Eliades / Duru Malyali
SESSION 4
Chairpersons: Nicos Skordis / Kosmas Georgiades / Fahad Saeed
11:40-12:00
Fertility in males and females - Nicos Skordis
12:00-12:20
Diabetes in Thalassaemia - Nicos Skordis
12:20-12:40
Pain Management in Haemoglobinopathies - Paul Telfer
12:40-13:00
Interactive Discussion
Facilitator: Photis Eliades
13:00-14:00
Lunch Break
SESSION 5
Chairpersons: Paul Telfer / Deema Badawi / Evgenia Georganda / Muna Khalil
14:00-14:20
Hypogonatism: from the Diagnosis to Treatment - Vincenzo De Sanctis
14:20-14:40
Emergency Management in Thalassaemia - John Porter
14:40-15:00
A Patient’s Experiences and Perspective in Emergency Room – Nancy Lucich
15:00-15:20
Patient Self- Management and Health Coaching - Durhane Wong-Rieger
15:20- 15:40
Communication to Patients and Families - Josephine Bila
15:40-16:00
Interactive Discussion
Facilitator: Photis Eliades
16:00-16:30
Coffee Break
16:30-16:50
Keeping a positive mind with Thalassemia - Maria Hadjidemetriou
DAY 4 – 23 October 2013
SESSION 6
Chairpersons: Ali Taher / Saeed Al Awadhi / Evangelos Alexiou / Rashid Ahmed
08:40-09:00
Bone Disease in Thalassaemia - Ersi Voskaridou
09:00-09:30
Image related Diagnosis and Monitoring - Evangelos Alexiou
09:30-09:50
Gene Therapy for Thalassaemia: Present and Future - Varnavas Constantinou
09:50-10:10
Kidney Disease in Thalassaemias- an emerging problem? - Ali Taher
10:10-10:30
Interactive Discussion
Facilitator: Photis Eliades
10:30-11:00
Coffee Break
SESSION 7
Chairpersons: Michael Angastiniotis / Ivan Ivanov / Michele Abi Saad / Al Anood Alwali
11:00-11:20
Case Study 1: Iron Chelation and its Adherence - Antonio Piga
11:20-11:40
Case Study 2: Heart and Chelation - Soteroulla Christou / Gregor Simamonian
11:40-12:00
Case Study 3: Access to Treatment - Vip Viprakasit
12:00-12:20
Case Study 4: Establishment of pregnancy in Thalassaemia and Monitoring - Nicos Skordis
12:20-12:40
Case Study 5: Psychological Coping mechanisms in Thalassaemia - Michael Angastiniotis / Ahmet Varoglou
12:40-13:00
Liver Disease in thalassaemia – Geoffrey Dusheiko
13:00-14:00
Lunch Break
SESSION 8
Chairpersons: Robert Ficarra / Fatemeh Hashemi / Kauthar Hassan Khurshid
14:00-14:15
Case Study 6: Infections – John Porter
14:15-14:30
New advances, new research, future outlook in care, treatment and cure - Maria-Domenica Cappellini
14:30:15:00
Interactive Discussion
Facilitator: Photis Eliades
15:00-16:00
Patients/Parents Associations Open Forum (Part 1)
Coordinators: Androulla Eleftheriou / Shobha Tuli1. Greek Thalassaemia Federation (Greece)
2. Thalassaemia Australia Inc (Australia)
3. Chronic Care Centre (Lebanon)
4. Charity Foundation for Special Diseases (Iran)
5. Maldivian Thalassaemia Society (Maldives)
6. Thalassaemia Association of Argentina (Argentina)
16:00 -16:30
Coffee Break
16:30-17:30
Patients/Parents Associations Open Forum (Part 2)
Coordinators: Robert Ficarra / Angelo Loris Brunetta
7. Thalassaemia Association in Niniva (Iraq)
8. Egyptian Thalassaemia Association (Egypt)
9. The Society for Inherited and Severe Blood Disorders (Trinidad and Tobago)
10. Lab One Foundation of Thalassaemia (Bangladesh)
11. Blood Patients’ Protection Council (India)
12. Meena Health Welfare Organization (Afghanistan)
17:30-18:30
TIF Constitutional Meeting (by invitation only)
Coordinators: Panos Englezos / George Constantinou
18:30-19:30
TIF General Assembly Meeting (by invitation only)
Coordinators: Panos Englezos / George Constantinou
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