Under the patronage of
H.E. Sheikh Nahayan Mabarak Al Nahyan
Cabinet Member and Minister of Tolerance and Coexistence
146
Speakers
56
Sessions
28
CME hours
Ms. Hadeel Iraq
Nutrition and Obesity Care Specialist, Family and Weight Management Clinic, Mavis Medix Clinic, Mississauga, Ontario, Canada
❝ It is my honor to participate in this esteemed gathering focused on rare diseases in the MENA region. The noble aim of this conference—to enhance the health and quality of life for individuals affected by rare diseases, particularly in our region—resonates deeply with my professional commitments. Conferences of this caliber are invaluable for fostering knowledge exchange and collaboration and play a crucial role in advancing our collective understanding and improving patient care. As a nutrition specialist and healthcare professional, I am dedicated to improving the lives of those grappling with metabolic disorders, including weight-related issues, alongside the unique challenges posed by rare diseases. This gathering provides a crucial platform for sharing expertise in dietary interventions and learning about the latest advancements in rare disease management. I extend my sincere gratitude to all involved in organizing and contributing to this event. Your efforts are vital in advancing our understanding and improving care for those with rare diseases in our MENA region. Together, we can make significant strides in enhancing the quality of life for these individuals and their families. ❞
Ms. Hadeel Iraq
Nutrition and Obesity Care Specialist, Family and Weight Management Clinic, Mavis Medix Clinic, Mississauga, Ontario, Canada
Dr. Ellie Carrell
Assistant Professor, Center for Inherited Myology Research, Virginia Commonwealth University, Richmond, Virginia, USA
❝ The MENA Congress for Rare Diseases is an incredible forum for advancing knowledge and establishing communities amongst clinicians, academic researchers, families, and industry partners. As an academic scientist, I am grateful for this conference for providing a window into the patient experience and clinical practice to inform ongoing therapeutic development. ❞
Dr. Ellie Carrell
Assistant Professor, Center for Inherited Myology Research, Virginia Commonwealth University, Richmond, Virginia, USA
Mrs. Duaa AbuRizik
CEO of Life and Health Insurance in Gulf Insurance Group and Foster Mother of Child with Developmental Delay and a Genetic Mutation in PRRT2 Gene, Kuwait
❝ As a dedicated adoptive mother of a child with a rare disease, I am honored to share my journey at the MENA Congress for Rare Diseases. My speech will focus on the intricate path of diagnosis and the transformative experience of motherhood when raising a child with special needs. I aim to shed light on the emotional and practical challenges faced during this journey, as well as the profound joys that come with it. Through my story, I hope to inspire and empower others navigating similar paths, fostering a deeper understanding and connection within our community. ❞
Mrs. Duaa AbuRizik
CEO of Life and Health Insurance in Gulf Insurance Group and Foster Mother of Child with Developmental Delay and a Genetic Mutation in PRRT2 Gene, Kuwait
Prof. Arif O. Khan
Chair of Pediatric and Neuro-ophthalmology, Eye Institute, Cleveland Clinic Abu Dhabi, Abu Dhabi, UAE
❝ In Middle East and North African countries (i.e., the MENA region), certain rare diseases are more common than in other areas of the world. Patients with such rare diseases require a high level of suspicion to diagnosis, may present to different subspecialists, and need a multidisciplinary approach. The MENA Congress for Rare Diseases is thus an important congress for practitioners in the MENA region that highlights relevant diseases which are often not well covered in other international conferences. The symposia of the congress and the broad range of specialties represented are impressive. I look forward to participating in and learning from the MENA Congress for Rare Diseases 2025. ❞
Prof. Arif O. Khan
Chair of Pediatric and Neuro-ophthalmology, Eye Institute, Cleveland Clinic Abu Dhabi, Abu Dhabi, UAE
Prof. Eman Gaad
Dean of Faculty of Education and Professor of Special and Inclusive Education, British University in Dubai, Dubai, UAE
❝ This conference is gaining strength every year. The amount of information, support, and new knowledge that are offered in this conference are immense. I had the privilege to speak and to present. I certainly look forward to learning at next year's congress ❞
Prof. Eman Gaad
Dean of Faculty of Education and Professor of Special and Inclusive Education, British University in Dubai, Dubai, UAE
Mrs. Hala Abass
Diploma in Mental Health and Psychological Counseling and Mother of Two Children with Mitochondrial Disorder, Dubai, UAE
❝ I am honored to take part in the MENA Congress for Rare Diseases 2025, the largest event for rare diseases in the region. I am grateful to connect with patients and their families to exchange experience and knowledge. As a mother of two children with a rare disease, I am glad to get the opportunity to share my experience in the congress and raise the awareness about mitochondrial disorders. ❞
Mrs. Hala Abass
Diploma in Mental Health and Psychological Counseling and Mother of Two Children with Mitochondrial Disorder, Dubai, UAE
Prof. Brahim Tabarki Melaiki
Consultant Pediatric Neurology, Prince Sultan Military Medical City, Riyadh, Saudi Arabia
❝ I am glad to participate in the MENA Congress for Rare Diseases 2025. This congress serves as a platform to present the latest advancements, exchange cutting-edge scientific knowledge, and discuss the newest clinical applications aimed at improving the care of patients with rare diseases. ❞
Prof. Brahim Tabarki Melaiki
Consultant Pediatric Neurology, Prince Sultan Military Medical City, Riyadh, Saudi Arabia
Dr. Karolina Podolska
Internal Physician, Accredited Duchenne Centers Program Manager, and Coordinator of Center for Adults with DMD, General University Hospital in Prague, Prague, Czech Republic
❝ Improving care for rare disease patients requires global collaboration and continuous inspiration from various parts of the world. MENA Congress for Rare Diseases will be a wonderful opportunity to share experience in the field of Duchenne muscular dystrophy and to gain knowledge and learn about care approaches in different regions than I am used to working in. ❞
Dr. Karolina Podolska
Internal Physician, Accredited Duchenne Centers Program Manager, and Coordinator of Center for Adults with DMD, General University Hospital in Prague, Prague, Czech Republic
Ms. Alexandra Heumber Perry
Chief Executive Officer, Rare Diseases International, Geneva, Switzerland
❝ I am eagerly anticipating the opportunity to participate in the MENA Congress for Rare Diseases 2025, where I look forward to engaging with healthcare providers, researchers, advocates, and patients as we work collectively to ensure that no person living with a rare disease is left behind. This congress perfectly aligns with RDI’s commitment to deepening our engagement and support for people living with rare diseases (PLWRD) and their communities across the MENA region. The high quality of the presentations, the diversity of topics covered, and the strong international participation underscore the significance of this congress as a key platform for advancing our shared mission. At Rare Diseases International, our vision is to create a world where people living with rare diseases and their families experience a better quality of life through full recognition and comprehensive support. This congress is a vital step in achieving that vision by bringing together global stakeholders to collaborate, innovate, and advocate for those who are too often overlooked ❞
Ms. Alexandra Heumber Perry
Chief Executive Officer, Rare Diseases International, Geneva, Switzerland
Dr. Michael Kiefer
Assistant Professor of Physical Therapy and Investigator in the Center for Inherited Myology Research, Virginia Commonwealth University, Richmond, Virginia, USA
❝ I am excited to be a part of the MENA Congress for Rare Diseases 2025. This congress is an excellent platform to foster collaboration and knowledge exchange across researchers, clinicians, and individuals with rare diseases and their families to advance therapies for individuals with rare diseases. ❞
Dr. Michael Kiefer
Assistant Professor of Physical Therapy and Investigator in the Center for Inherited Myology Research, Virginia Commonwealth University, Richmond, Virginia, USA
Dr. Rasha Abdelrahman
Head of Psychology Department & Assistant Professor, College of Humanities and Sciences, Ajman University, Ajman, UAE
❝ Participating in the MENA Congress for Rare Diseases 2024 was a truly inspiring experience, and I am deeply grateful to the organizers for creating such a meaningful event. It was an honor to share insights on stress management for parents of children with special needs and to engage with a community so dedicated to improving lives. The congress provided a unique platform for learning, collaboration, and the exchange of ideas, fostering a sense of unity and purpose among professionals, researchers, and advocates alike. I look forward to continuing this important work and am excited to share more insights at the coming congress, MENA Congress for Rare Diseases 2025. For anyone passionate about making a difference in the field of rare diseases, attending this congress is an invaluable opportunity to connect, contribute, and be part of a movement that truly matters. ❞
Dr. Rasha Abdelrahman
Head of Psychology Department & Assistant Professor, College of Humanities and Sciences, Ajman University, Ajman, UAE
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
❝ I look forward to participating in the MENA Congress for Rare Diseases 2025. This is an excellent opportunity for stakeholders across the translational spectrum of targeted therapy development to share their expertise and to learn from professionals in related fields. ❞
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
Mrs. Laura Laugier
Founder of Neurodiverse Families Events and Mother of a Child with Cri du Chat Syndrome, Dubai, UAE
❝ Having spoken at the conference last year, I consider it a privilege to return. I look forward to sharing what this journey with rare disease has taught me alongside other parents. ❞
Mrs. Laura Laugier
Founder of Neurodiverse Families Events and Mother of a Child with Cri du Chat Syndrome, Dubai, UAE
Ms. Nipa Bhuptani
Founder and Chief Values Officer, Applied & Behavioral Training Institutes, Abu Dhabi, UAE
❝ It’s a privilege to once again present at the MENA Congress for Rare Diseases, a platform that has inspired me for the past three years. This year, I am excited to introduce the ACE program, which focuses on driving Alignment, Commitment, and Excellence to build inclusive environments for People of Determination. I believe this program can be a game-changer for organizations, as it presents a unique opportunity for executives and decision-makers in the UAE to learn from leading experts and gain practical tools to drive meaningful change. I encourage you to join us and be part of this important conversation on inclusion and belonging ❞
Ms. Nipa Bhuptani
Founder and Chief Values Officer, Applied & Behavioral Training Institutes, Abu Dhabi, UAE
Mr. Abdulla Lutfi
Autistic Savant Artist, Dubai, UAE
❝ My name is Abdulla Lutfi, I am Autistic Savant, black and white Emirati artist. I am honored to be a part of the MENA Congress for Rare Diseases 2025 in partnership with Burjeel Medical City and honored to be speaking at the 1st MENA Summit for Autism and Neurodivergence. I see my autism not as a limitation but as a strength. It has given me a different way of seeing the world, and I realized I could use that to tell stories, not only about myself but about the people and places around me. I am proud to represent the UAE as an autistic savant artist, and I hope my work inspires others to embrace their differences and use their unique talents to share their voices. Every stroke of my pen is a reminder that we all have a special way of seeing and experiencing the world, and that should be celebrated. ❞
Mr. Abdulla Lutfi
Autistic Savant Artist, Dubai, UAE
Mr. Rifaat R. Rawashdeh
DOH Licensed, ABGC Certified Genetic Counselor, Oncology Institute, Cleveland Clinic Abu Dhabi, UAE
❝ Participating in the annual MENA Congress of Rare Diseases provides an invaluable experience to engage with leading experts and stakeholders to share insights and discuss breakthroughs in this field. The inclusion of a dedicated genetic counseling conference is particularly vital as it addresses the growing need for specialized support in understanding and managing the genetic aspects of rare diseases, ultimately improving outcomes and quality of life in the MENA region ❞
Mr. Rifaat R. Rawashdeh
DOH Licensed, ABGC Certified Genetic Counselor, Oncology Institute, Cleveland Clinic Abu Dhabi, UAE
Ms. Tanuka Gupta
Neuroaffirming Senior Clinical Psychologist, Al Noor Training Centre for People of Determination, Dubai, UAE
❝ Join me at the MENA Summit for Autism and Neurodivergence, an exciting part of the MENA Congress for Rare Diseases 2025! This event is a unique opportunity to contribute to the advancement of our region. I am looking forward to this opportunity to chair a session on discussing various ways to foster understanding of autism from a neuro-affirmative lens, share cutting-edge insights and innovative practices, and advocate for inclusive policies that enhance the lives of autistic individuals and families across the MENA region. As a neurodivergent professional, I am incredibly passionate about cultivating a neuro inclusive culture because inclusion is not a privilege but a right connected to the fundamental human value of belonging. ❞
Ms. Tanuka Gupta
Neuroaffirming Senior Clinical Psychologist, Al Noor Training Centre for People of Determination, Dubai, UAE
Prof. Haleama Al Sabbah
Professor, Department of Public Health, College of Health Sciences, Abu Dhabi University, Abu Dhabi, UAE
❝ Join me for a transformative experience at the MENA Congress for Rare Diseases! I’m thrilled to present “Nutritional Challenges in Managing Rare Diseases,” where we’ll explore how innovative nutrition strategies can significantly enhance patient care. It is your chance to be part of the conversation that will shape the future of rare disease management. Don’t miss this opportunity. Your insights and engagement are keys to making a real impact! ❞
Prof. Haleama Al Sabbah
Professor, Department of Public Health, College of Health Sciences, Abu Dhabi University, Abu Dhabi, UAE
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
❝ As a parent of two wonderful children with neurodivergent traits, I have had the privilege of learning and growing through the unique experiences and challenges that come with neurodiversity. Embracing a strengths-based approach has been essential in supporting and nurturing their individual strengths and talents. I am truly honored to have been given the opportunity to speak at the MENA Congress for Rare Diseases 2025. It is my aspiration to impart my knowledge and insights to the audience, drawing from my own experiences. Furthermore, I am immensely grateful for the inclusive approach taken by the MENA Congress for Rare Diseases 2025, a unique event in the region, in recognizing the importance of neurodiversity. The inclusion of the MENA Summit for Autism and Neurodivergence as part of the MENA Congress for Rare Diseases 2025 is a significant step forward in creating a space where individuals and families affected by neurodivergent conditions can come together, share knowledge and foster understanding and acceptance within the community. ❞
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
Prof. Tawfeg Ben-Omran
Division Chief & Senior Consultant, Medical Genetic Department, Hamad Medical Corporation & Sidra Medicine, Doha, Qatar
❝ MENA Congress for Rare Diseases 2025 will provide a unique platform for innovative discoveries and insightful discussions and collaborative networking for rare diseases. Our congress allows exchange of experiences and knowledge between all participants from the region and all over the world ❞
Prof. Tawfeg Ben-Omran
Division Chief & Senior Consultant, Medical Genetic Department, Hamad Medical Corporation & Sidra Medicine, Doha, Qatar
Dr. Abdullah Al Zayed
Consultant Internist and Hematologist, Qatif Health Network, Qatif, Saudi Arabia
❝ Hailing from the eastern province of Saudi Arabia, where rare diseases are prevalent, I consider the MENA Congress for Rare Diseases a profoundly enlightening and enriching experience for all individuals contending with these health challenges. The MENA Congress for Rare Diseases serves as a pivotal regional summit concentrating on rare diseases and orphan drugs within the Middle East and North Africa (MENA) region. Its aim is to convene healthcare professionals, researchers, policymakers, and patient advocates to deliberate on advancements, exchange knowledge, and foster collaboration towards bettering the care and treatment of rare diseases. From a personal perspective, I look forward to delving into alpha thalassemia and assimilating the latest updates on treatment and advancements ❞
Dr. Abdullah Al Zayed
Consultant Internist and Hematologist, Qatif Health Network, Qatif, Saudi Arabia
Dr. Mohamed Babiker
Consultant Pediatric Neurology and Director of Pediatric Neurology Residency Program, Al Jalila Children's Speciality Hospital
❝ Being part of this conference is a privilege and an opportunity to contribute to a cause that profoundly impacts lives. By engaging with experts, sharing insights, and collaborating on solutions. We, together, can drive progress, illuminate the path forward, and bring hope to those affected by rare diseases and their families. Our shared knowledge, passion, ideas, and innovation will drive meaningful change for a better now and tomorrow. ❞
Dr. Mohamed Babiker
Consultant Pediatric Neurology and Director of Pediatric Neurology Residency Program, Al Jalila Children's Speciality Hospital
WELCOME LETTER
Professor Ayman El-Hattab
Congress Chairman, MENA Congress for Rare Diseases
Professor, College of Medicine, University of Sharjah
Consultant Clinical Genetics at Burjeel Medicl City, University Hospital Sharjah, Kanad Hospital, and Genesis Healthcare Center, UAE
Under the patronage of H.E. Sheikh Nahayan Mabarak Al Nahyan, Cabinet Member and Minister of Tolerance and Coexistence, the MENA Congress for Rare Diseases 2025 in partnership with Burjeel Medical City will take place from 17 to 20 April 2025 at Beach Rotana Hotel, Abu Dhabi, United Arab Emirates.
The previous MENA Congress for Rare Diseases 2024 held on 16-19 May 2024 in Abu Dhabi, turned out to be the largest event for rare diseases and a key milestone in showcasing the regions dedication to improving the lives of individuals afflicted with these disorders. It was attended by 1105 delegates with 17% coming from 47 countries outside the UAE. The meeting was held over 4 full days and consisted of 39 sessions including 139 presentations given by 141 speakers, including 51 international experts coming from 27 different countries. The presentations received very high evaluations as the vast majority of the attendees (96.7%) scored the presentations as above average. The congress also received 78 high-quality scientific abstracts related to different aspects of rare diseases. The abstracts were featured as oral presentations and posters and published in the PubMed Central-indexed scientific journal Therapeutic Advances in Rare Disease. The top 7 abstracts were awarded and assigned oral presentations. The congress was held under the patronage of H.E. Sheikh Nahayan Mabarak Al Nahyan who attended the opening ceremony and gave the opening speech. The congress received the support of 34 scientific partners including UAE University, Abu Dhabi University, Ajman University, Rare Disease International, and Undiagnosed Disease International. The congress also received marketing support from 23 media partners including Balsam, Medarabia, and Rare Evolution Magazine; and was covered by key media and news outlets during and after the meeting including WAM (https://wam.ae/en/article/b36k5bz), Aletihad, and Albayan.
Our upcoming meeting, MENA Congress for Rare Diseases 2025 in partnership with Burjeel Medical City, Beach Rotana Abu Dhabi, 17-20 April 2025, will continue to be the largest event for rare diseases in the region. It will last for 4 full days with more than 150 speakers including more than 70 international speakers with expertise on various topics related to rare diseases including advances in understanding rare diseases, artificial intelligence, best-practices for management, novel therapies, updates on diagnostics, research and innovation, gene and cell therapy, preventive medicine, genetic counseling, rare blood disorders, rare neurologic diseases, rare ophthalmologic disorders, rare surgical cases, autism and neurodivergence, dental care, rehabilitation, nutritional support, inclusion and diversity, patient advocacy, psychosocial challenges, access to orphan drugs, media awareness, insurance coverage, Angelman syndrome, and Huntington disease.
More than 1500 attendees are expected to participate with more than 25% coming from outside the country. The meeting will be attended by healthcare providers including medical doctors from variable specialties, dentists, nurses, dietitians, physical, speech, and occupational therapists, pharmacists, laboratory personnel, and genetic counselors, medical and medical sciences students, researchers, scientists, and educators, and individuals with rare diseases and their families. Laboratories, pharmaceutical companies, clinics and hospitals, academic institutions, community services, and support and advocacy groups will also participate.
Again, the upcoming congress will accept scientific abstracts that will be presented as posters and will be published in a scientific PubMed Central-indexed journal. The top abstracts will be awarded and presented as oral presentations. Furthermore, the Award for Outstanding Achievement in Rare Diseases will be launched during the meeting and honored to pioneers in the field of rare diseases including researchers, healthcare providers, advocates, patients and their caretakers, and institutions. This award will be distributed during the opening ceremony of the congress.
Burjeel Medical City (BMC) remains the meeting partner and the major supporter for this congress. BMC is a 400-bed multispecialty hospital and quaternary care center located in Abu Dhabi, UAE. It is the region’s complex care hub with over 60 adult and pediatric specialties, aided by state-of-the-art medical technology and an international team of experts. The 1.2 million-square-foot hospital is a flagship facility under the Burjeel Holdings umbrella. It is renowned for key specialties including oncology, hematology, bone marrow transplantation, neurosurgery, multi-organ transplantation, advanced orthopedic surgery, pediatric subspecialties, fetal medicine, nuclear medicine, and advanced gynecology. BMC harbors the Center for Research on Rare Blood Disorders (CR-RBD), one of the region’s leading research hubs with a global portfolio of high impact publications, international guidelines, and various observational studies and clinical trials of novel therapeutics designed to improve the outcomes of patients with rare blood disorders (https://burjeel.com/burjeelmedicalcity)
This conference is a unique platform that brings all stakeholders involved in rare diseases to one place to obtain the most updated knowledge, exchange experience, advance research, establish networks, and explore new horizons and collaborative opportunities aiming ultimately to provide better care for individuals with rare diseases.
We look forward to seeing you among us at the MENA Congress for Rare Diseases 2025 in partnership with Burjeel Medical City.
ABSTRACT SUBMISSION
Abstract applications are now being accepted at the MENA Congress for Rare Diseases 2025 in partnership with Burjeel Medical City, 17–20 April 2025, Beach Rotana Hotel, Abu Dhabi, United Arab Emirates. Physicians, researchers, and students are encouraged to submit abstracts in any field related to rare diseases. The top 5 abstracts will be awarded and presented orally during the research session. The abstract submission deadline is 15 November 2024.
Abstracts can be in any field related to rare diseases including (but not limited to) clinical case description, basic sciences, epidemiology, diagnostic tests, and therapeutics.
During submission the following information are needed: abstract author(s), abstract title, and abstract body which should not exceed 250 words.
Abstracts will be reviewed and the top 5 will receive financial awards (10,000 AED for the first, 7,000 AED for the second, 5,000 AED for the third, 3,000 AED for the fourth, and 2,000 AED for the fifth). The 5 winner abstracts will be presented orally during the abstract presentation session.
The remaining abstracts will be presented as posters. Posters will be reviewed and the top 5 posters will be awarded 1,000 AED each.
Abstract submission deadline is 15 November 2024.
The 5 winner abstracts will be announced on 15 January 2025.
TOPICS COVERED
Novel therapies for rare diseases
Updates on diagnostics for rare diseases
Artificial intelligence and rare diseases
Best-practices for management of rare diseases
Precision medicine for rare diseases
Research and innovation in rare diseases
Gene and cell therapy
Preventive medicine
Genetic counseling
Hemoglobinopathies
Rare neurologic diseases
Rare ophthalmologic disorders
Rare surgical cases
Autism and neurodivergence in rare diseases
Dental care for rare diseases
Rehabilitation for rare diseases
Nutritional support for rare diseases
Registries for rare diseases
Patient advocacy for rare diseases
Inclusion and diversity in rare diseases
Psychosocial challenges in rare diseases
Access to orphan drugs for rare diseases
Media awareness and rare diseases
Insurance coverage for rare diseases
Angelman syndrome
Huntington disease
Diagnostic challenges in rare diseases
Patients’ experiences and insights
PARTICIPANTS
Medical doctors from variable specialties and dentists
Nurses, dietitians, therapists, and genetic counselors
Pharmacists and laboratory personnel
Medical and medical sciences students
Researchers, scientists, and educators
Individuals with rare diseases and their families
Laboratories and pharmaceutical companies
Clinics and hospitals
Academic institutions
Community services
Support and advocacy groups