MENA Congress for Rare Diseases
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Under the patronage of

H.E. Sheikh Nahayan Mabarak Al Nahyan

Cabinet Member and Minister of Tolerance and Coexistence

MENA Congress for Rare Diseases

 

 

 

 

 

 

 

 

 

 

150+

Speakers

40+

Sessions

28

CME hours

Location

Beach Rotana, Abu Dhabi

CLICK HERE TO REGISTER

17 - 20 April 2025

Calendar
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Prof. Tawfeg Ben-Omran

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. Karolina Podolska

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. Hadeel Iraq

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

Mrs. Laura Laugier

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

Dr. Abdullah Al Zayed

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

Prof. Eman Gaad

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

Dr. Rasha Abdelrahman

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

Ms. Nipa Bhuptani

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. Rifaat R. Rawashdeh

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

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

Ms. Alexandra Heumber Perry

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

Prof. Brahim Tabarki Melaiki

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. Mohamed Babiker

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

Ms. Shija Sapru

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. Haleama Al Sabbah

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

Prof. Arif O. Khan

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

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WELCOME LETTER

Professor Ayman El-Hattab

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.

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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

Medical doctors from variable specialties and dentists

Nurses, dietitians, therapists, and genetic counselors

Nurses, dietitians, therapists, and genetic counselors

Pharmacists and laboratory personnel

Pharmacists and laboratory personnel

Medical and medical sciences students

Medical and medical sciences students

Researchers, scientists, and educators

Researchers, scientists, and educators

Individuals with rare diseases and their families

Individuals with rare diseases and their families

Laboratories and pharmaceutical companies

Laboratories and pharmaceutical companies

Clinics and hospitals

Clinics and hospitals

Academic institutions

Academic institutions

Community services

Community services

Support and advocacy groups

Support and advocacy groups

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Scientific partners

https://www.uaeu.ac.ae/en/https://www.adu.ac.ae/https://www.ajman.ac.ae/enhttps://www.buid.ac.ae/https://abtinstitute.org/https://neuroscience.episirus.org/bangkok/

Media partners

https://www.fwafrica.net/https://intlbm.com/https://m.edarabia.com/https://mededgemea.com/https://mediworldme.com/https://pharmic.eu/https://pharmicnews.com/https://worldbusinessoutlook.com/https://kindcongress.com/https://cn1699.com/https://expo-book.com/https://expo-book.com/https://www.vydya.com/https://allconferencealert.net/https://internationalconferencealerts.com/https://www.medicalbuyer.co.in/https://www.freeconferencealerts.com/
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