Day 1 - Friday - 3 Mar 2023

Opening session: current challenges and future opportunities for rare diseases

2:00 - 2:30
Genetic Diseases: Current and Future Genetic Therapies

Dr. Tawfeg Ben-Omran

Division Chief & Senior Consultant, Medical Genetic Department, Hamad Medical Corporation & Sidra Medicine, Doha, Qatar

2:30 - 3:00
Ethical challenges in rare diseases

Dr. Waseem Fathalla

Division Chair & Consultant, Pediatric Neurology, Sheikh Shakhbout Medical City, Abu Dhabi, UAE

3:00 - 3:30
TBA

TBA

3:30 - 4:00
TBA

TBA

4:00 - 4:30

Break

Rare heart & lung diseases

4:30 - 5:00
Case scenarios on cardiomyopathy and arrhythmia

Dr. Mohamed Sulaiman

Consultant Pediatric Cardiology & Director, KidsHeart Medical Center, Abu Dhabi, Dubai, Al Ain, UAE

5:00 - 5:30
Cardiac anomalies in genetic syndromes: an overview

Dr. Haitham Talo

Consultant Pediatric Cardiology, Danat Al Emarat hospital & Mediclinic facilities, Abu Dhabi, UAE

5:30 - 6:00
A new era in cystic fibrosis management

Dr. Rania Abdelkarim

Consultant Pediatric Pulmonary, Mediclinic City Hospital, Dubai, UAE

6:00 - 6:30
Sudden cardiac death in children and young adults

Dr. Anas Abu Hazeem

Consultant Pediatric Cardiology, KidsHeart Medical Center, Abu Dhabi, UAE

6:30 - 7:00
TBA

TBA

Diseases & family meetings: CDKL5 & Rett

4:30 - 5:00
Building a research community to tackle CDKL5 deficiency disorder

Mr. Majid Jafar

Co-founder, Loulou Foundation, London, UK

5:00 - 5:30
Rehabilitation in CDKL5 deficiency disorder

Ms. Abir Massaad

Clinical Team Supervisor & Senior Pediatric Physical Therapist, High Hopes Pediatric Therapy Center, Dubai, UAE

5:30 - 6:00
Rett syndrome

Dr. Arif Khan

CEO & Founder, Neuropedia Children’s Neuroscience Center, Consultant Pediatric Neurologist, Dubai, UAE

6:00 – 7:00
CDKL5 deficiency disorder family meeting
6:00 – 7:00
Rett syndrome family meeting
Chat with a representative

Address: MENA Organization for Rare Diseases FZ-LLC, SD2-137, 2nd floor, Dubai Science Park, Dubai, United Arab Emirates

Phone Number: +971 50 359 7474

Email Address: contact@menararediseases.com

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