MENA Congress for Rare Diseases
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Scientific Main Track: Al Thuraya A&B

Opening Session

Chairperson: Prof. Ayman El-Hattab
Consultant Clinical Genetics at Burjeel Medical City, University Hospital Sharjah, Kanad Hospital, and Genesis Healthcare Center, UAE

09:30 AM - 09:40 AM

Opening remarks: MENA Congress for Rare Diseases

Prof. Ayman El-Hattab

Consultant Clinical Genetics at Burjeel Medical City, University Hospital Sharjah, Kanad Hospital, and Genesis Healthcare Center, UAE


09:40 AM - 10:00 AM

Bridging global commitments and regional realities: the MENA region's role in shaping the impact of the world health assembly resolution on rare diseases

Ms. Alexandra Heumber Perry

Chief Executive Officer, Rare Diseases International, Geneva, Switzerland


10:00 AM - 10:30 AM

Opening ceremony and award distribution

10:30 AM - 11:00 AMCoffee Break

Satellite Symposium: Al Thuraya B

1st MENA Summit for Gene and Cell Therapy

Chairperson: Dr. Nameer Al-Saadawi
Deputy Chief Medical Officer and Clinical Director of Abu Dhabi Bone Marrow Transplant Program, Abu Dhabi Stem Cell Center, Abu Dhabi, UAE

11:00 AM - 11:20 AM

Revolutionizing healthcare: the rise of gene therapy in the UAE - ADSCC experience

Dr. Mohamed Abuhaleeqa

Consultant Hematology and Bone Marrow Transplant and Chair of Academic Affairs Department, Abu Dhabi Stem Cells Center (ADSCC), Abu Dhabi, UAE


11:20 AM - 11:40 AM

The promise of gene therapies for neuromuscular disorders: experience from Qatar

Prof. Tawfeg Ben-Omran

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


11:40 AM - 12:00 PM

Stem cell therapy for cardiac diseases, the past, the present, the future

Dr. Yahya Kiwan

Senior Consultant Interventional Cardiologist and Stem Cells and Regenerative Medicine Specialist, Dr Sulaiman Al Habib Hospital, Dubai, UAE


12:00 PM - 12:20 PM

Is the stem cell the hope for neurodegenerative disorder

Dr. Mohamad Al Hakim

Founder and Chairman, American Spine Center, Dubai, UAE


12:20 PM - 12:40 PM

Cord blood unit is not just a bag of blood

Dr. Hatim Sidahmed

Head of Cord Blood Bank, M42, Abu Dhabi, UAE


12:40 PM - 01:00 PM

Future of cell and gene therapy for rare diseases

Dr. Shaikha Almazrouei

Researcher of Genomics, Technology Innovation Institute, Abu Dhabi, UAE

Satellite Symposium: Al Thuraya A

1st MENA Summit for Neurotherapeutic Advancements

Chairperson: Prof. Brahim Tabarki Melaiki
Consultant Pediatric Neurology, Prince Sultan Military Medical City, Riyadh, Saudi Arabia

11:00 AM - 11:30 AM

Treatable metabolic and genetic disorders mimicking cerebral palsy

Prof. Brahim Tabarki Melaiki

Consultant Pediatric Neurology, Prince Sultan Military Medical City, Riyadh, Saudi Arabia


11:30 AM - 12:00 PM

Vitamins-responsive neurological disorders: cheap to treat but too expensive to miss!

Dr. Mohamed Babiker

Consultant Pediatric Neurology and Director of Pediatric Neurology Residency Program, Al Jalila Children's Speciality Hospital


12:00 PM - 12:30 PM

Shedding light on rare treatable movement disorders

Dr. Dina Saleh

Head of Department and Consultant, Pediatric Neurology, Reem Hospital, Abu Dhabi, UAE


12:30 PM - 01:00 PM

Spinal muscle atrophy: Egyptian experience with different modalities of intervention

Prof. Maha Zaki

Professor, Clinical Genetics Department, Human Genetics & Genome Research Institute, National Research Centre, Cairo, Egypt

Satellite Symposium: Al Mas Hall

2nd MENA Summit for Genetic Counselors - Part 1

Chairperson: Dr. Muna Al Saffar
Director of Genetic Counseling Program, Assistant Professor, and DOH Licensed and Canadian Board Certified Genetic Counselor, Department of Genetic and Genomics, College of Medicine and Health Sciences, United Arab Emirates University, Al Ain, UAE

11:00 AM - 11:20 AM

The role of genetic counselors in genomic era

Dr. Muna Al Saffar

Director of Genetic Counseling Program, Assistant Professor, and DOH Licensed and Canadian Board Certified Genetic Counselor, Department of Genetic and Genomics, College of Medicine and Health Sciences, United Arab Emirates University, Al Ain, UAE


11:20 AM - 11:40 AM

The changing face of genetic counseling in the era of precision medicine: experience from Qatar

Dr. Reem Al-Sulaiman

Acting Chairman of Medical Genetics Department, Sr. Consultant Genetic Counseling (ABGC Board), Lead of Genetic Counseling Directory, Hamad Medical Corporation, Doha, Qatar


11:40 AM - 12:00 PM

Genetic counselling achievements and milestones: insights from the Oman

Ms. Khalsa Al-Kharusi

Genetic counsellor, Genetics and Developmental Medicine Clinic, Sultan Qaboos University Hospital, Muscat, Oman


12:00 PM - 12:20 PM

Cancer genetic counseling service outcomes: a single center experience in Abu Dhabi

Mr. Rifaat Rawashdeh

DOH Licensed, ABGC Certified Genetic Counselor, Oncology Institute, Cleveland Clinic Abu Dhabi, UAE


12:20 PM - 12:40 PM

Genetic counseling in reproductive decision-making

Ms. Laura Paquette

DOH Licensed & ABGC Certified Genetic Counselor, Abu Dhabi Health Services Company (SEHA), Abu Dhabi, UAE


12:40 PM - 01:00 PM

Savings by genetic counselors in a tertiary pediatric hospital

Mrs. Shruti Shenbagam

Certified Genetic Counselor, Al Jalila Children’s Specialty Hospital, Dubai, UAE

01:00 PM - 02:00 PMLunch Break

Satellite Symposium: Al Mas Hall

2nd MENA Summit for Genetic Counselors - Part 2

Chairperson: Dr. Muna Al Saffar
Director of Genetic Counseling Program, Assistant Professor, and DOH Licensed and Canadian Board Certified Genetic Counselor, Department of Genetic and Genomics, College of Medicine and Health Sciences, United Arab Emirates University, Al Ain, UAE

02:00 PM - 02:40 PM

Ethical dilemmas and psychosocial considerations in genetic counseling: navigating IVF in the Arab world

Mrs. Dianne Alameddine

ABGC Certified and DHA Licensed Genetic Counselor, Igenomix, Dubai, UAE

Mrs. Lea Abed

EBMG Certified and DHA Licensed Genetic Counselor, Igenomix, Dubai, UAE


02:40 PM - 03:00 PM

The utility of rapid whole genome sequencing in an ICU setting

Mr. Alan Taylor

Certified Genetic Counselor, Al Jalila Children’s Specialty Hospital, Dubai, UAE


03:00 PM - 03:20 PM

The role of genetic counseling in addressing age-related diseases

Ms. Maria Antonela Axinte

Genetic Counselor and Founder, DNA Longevity, Dubai, UAE


03:20 PM - 03:40 PM

Bridging the gap: the lab genetic counselor’s experience and impact

Mrs. Sonika Sachanandani-Phulwani

Licensed Genetic Counselor, M42 (Biogenix), Abu Dhabi, UAE


03:40 PM - 04:00 PM

A guide to effective engagement in the Arab world: strategies for genetic counselors, experts, and scientists

Mrs. Hibat Omer

Founder & Director Genomics Hub, Abu Dhabi, UAE

Satellite Symposium: Al Thuraya B

1st MENA Summit for Hemoglobinopathies

Chairperson: Prof. Khaled Musallam
Group Chief Research Officer, Burjeel Holdings, Abu Dhabi, UAE

02:00 PM - 02:20 PM

Beta-thalassemia in the era of disease-modifying therapies

Prof. Ali Taher

Associate VP for Academic Centers, Development, and External Affairs, Director for Naef K. Basile Cancer Institute, and Founding Director of Fellowship and Residents Research Program, Faculty of Medicine, American University of Beirut, Beirut, Lebanon


02:20 PM - 02:40 PM

Alpha-thalassemia revisited

Dr. Abdullah Al Zayed

Consultant Internist and Hematologist, Qatif Health Network, Qatif, Saudi Arabia


02:40 PM - 03:00 PM

Novel targets for pharmacologic management of sickle cell disease

Prof. Salam Alkindi

Professor, Department of Hematology, Sultan Qaboos University, Muscat, Oman


03:00 PM - 03:20 PM

Iron overload in hemoglobinopathies: conquered or forgotten?

Prof. Mohamed Yassin

Head of Hematology Department, Senior Consultant Hematology and BMT, and Program Director of Hematology Fellowship Program, Hamad Medical Corporation, Doha, Qatar


03:20 PM - 03:40 PM

Hemoglobinopathies burden in the UAE

Dr. Hany Dewedar

Consultant Hematology, Dubai Thalassemia Centre, Dubai Health, Dubai, UAE


03:40 PM - 04:00 PM

Global approaches to screening and prevention strategies of hemoglobinopathies: the Saudi experience

Prof. Hatoon Ezzat

Advisor to the Vice Minister and the Director of Blood Disorder Administration, Saudi Minstry of Health, Riyadh, Saudi Arabia

Satellite Symposium: Al Thuraya A

1st MENA Summit for the Limb Girdle Muscular Dystrophies

Chairperson: Prof. Nicholas Johnson
Director of the Center for Inherited Myology Research (CIMR), Professor, and Vice Chair of Research in Neurology, Virginia Commonwealth University, Richmond, Virginia, USA

02:00 PM - 02:20 PM

Overview and management of limb girdle muscular dystrophies

Prof. Nicholas Johnson

Director of the Center for Inherited Myology Research (CIMR), Professor, and Vice Chair of Research in Neurology, Virginia Commonwealth University, Richmond, Virginia, USA


02:20 PM - 02:40 PM

The Egyptian experience with limb girdle muscular dystrophies

Dr. Rasha El-Sherif

Assistant professor of Neurology, Newgiza University, Chair of Myo-Care Foundation, and Director of Neuromuscular Registry, Cairo, Egypt


02:40 PM - 03:00 PM

Genetic testing and other diagnostics in limb girdle muscular dystrophies

Dr. Samuel Carrell

Assistant Professor of Neurology and the Associate Director of the Center for Inherited Muscle Research (CIMR), Virginia Commonwealth University, Richmond, Virginia, USA


03:00 PM - 03:20 PM

The role of physical therapy and exercise in management of limb girdle muscular dystrophies

Dr. Michael Kiefer

Assistant Professor of Physical Therapy and Investigator in the Center for Inherited Myology Research, Virginia Commonwealth University, Richmond, Virginia, USA


03:20 PM - 03:40 PM

The development of gene therapies in limb girdle muscular dystrophies

Dr. Ellie Carrell

Assistant Professor, Center for Inherited Myology Research, Virginia Commonwealth University, Richmond, Virginia, USA


03:40 PM - 04:00 PM

Success of genetic and other precision therapies in related conditions

Dr. Arturo Saavedra

Dean of Virginia Commonwealth University School of Medicine and Executive Vice President for Medical Affairs, Virginia Commonwealth University, Richmond, Virginia, USA

04:00 PM - 04:30 PMCoffee Break

Satellite Symposium: Al Thuraya A

1st MENA Summit for Autism and Neurodivergence

Chairperson: Ms. Tanuka Gupta
Neuroaffirming Senior Clinical Psychologist, Al Noor Training Centre for People of Determination, Dubai, UAE

04:30 PM - 04:50 PM

Neurodiversity 101: The spectrum of human minds and body

Mrs. Karen Kehdy

Neurodiversity Advocate, Writer, and Mother of Two Neurodivergent Children, Dubai, UAE


04:50 PM - 05:10 PM

Understanding and embracing neurodivergence: key to fostering neuroinclusive spaces

Dr. Haneesha Pinnamaraju

Neurodevelopmental & Behavioral Pediatrics, Neuropedia Children's Neuroscience Center, Dubai & Sharjah, UAE


05:10 PM - 05:30 PM

Neuroaffirming approach: shifting from a deficit-lens to a strength-based approach

Ms. Shija Sapru

Neurodiversity and Strength-Based Approach Advocate, Certified in Twice Exceptional (2e) Education from Bridges Graduate School, and Supporter of Alternative Schooling Approaches, Dubai, UAE


05:30 PM - 05:50 PM

What causes autism? - Let’s try again

Dr. Arif A. Khan

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


05:50 PM - 06:10 PM

My journey as an artist on the autism spectrum

Mr. Abdulla Lutfi

Autistic Savant Artist, Dubai, UAE


06:10 PM - 06:30 PM

ADHD wonders

Dr. Hana Al Geilani

Specialist Psychiatrist, American Wellness Center and Windsor Medical Center, Dubai, UAE

Satellite Symposium: Al Thuraya B

1st MENA Summit for Inclusion and Diversity

Chairperson: Mrs. Renate Baur-Richter
Executive Director, Access for All - Institute for Accessibility and Inclusion, Abu Dhabi, UAE

04:30 PM - 04:50 PM

Innovation in action: how technology is reshaping inclusion for people of determination

Mrs. Renate Baur-Richter

Executive Director, Access for All - Institute for Accessibility and Inclusion, Abu Dhabi, UAE


04:50 PM - 05:10 PM

The role of stakeholders in shaping inclusive frameworks

Mr. Johannes Loh

Director, Government and Public Sector, MENA Consulting Services, Ernst & Young Middle East, Abu Dhabi, UAE


05:10 PM - 05:30 PM

Redefining inclusion: sustainable business models by people of determination within and beyond corporations and government

Dr. Alberto Peralta

Assistant Professor in the College of Business and Former Director of Innovation, Abu Dhabi University, Abu Dhabi, UAE


05:30 PM - 05:50 PM

Disability representation in media through a Middle Eastern lens

Ms. Noura Alblooki

Senior Editor, Social Media, Abu Dhabi Media Network, Abu Dhabi, UAE

برنامج تدريبي: قاعة الماس

منهجية بوب لتأهيل الحواس (اليوم الأول)

رئيس الجلسة: أ.د بهاء الدين جلال
مدير مركز هيلب للشرق الاوسط وشمال افريقيا, مدينة الكويت, الكويت

05:30 PM - 09:30 PM

أسس علم تحليل الحواس

أ.د بهاء الدين جلال

مدير مركز هيلب للشرق الاوسط وشمال افريقيا, مدينة الكويت, الكويت

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