❝ I am honored to be part of the the MENA Congress for Rare Diseases. Knowledge sharing through such dedicated platforms is essential in rare diseases, to realize state of the art advances in diagnosis and management through evolving evidence and expert opinion. The journey from bench, to bedside, to the community is fueled by collaboration between different stakeholders involved in the care and research of rare diseases. ❞
❝ I am honored to be invited to serve on the scientific committee for the upcoming MENA Congress for Rare Diseases. As a geneticist and member of Saudi Society of Medical Genetics I have dedicated my career to advancing research and understanding of rare diseases, particularly in the MENA region. I am passionate about bringing together experts from across the region to share knowledge, foster collaboration, and advocate for the needs of patients with rare diseases. I believe that the MENA Congress for Rare Diseases will play a crucial role in advancing the diagnosis, treatment, and care for patients with rare diseases in our region. I am committed to working with the scientific committee to make this event a success and to further the cause of rare disease research and advocacy in the MENA region. ❞
❝ The Angelman Syndrome Foundation is delighted to take part in the forthcoming MENA Congress for Rare Diseases, a pivotal event that holds immense significance in the realm of rare diseases. This gathering brings together a diverse array of stakeholders, including healthcare professionals, researchers, advocates, patients, and policymakers, all dedicated to advancing the understanding and treatment of rare diseases in the MENA region. We are honored to take part in this transformative journey, fostering connections, sparking innovation, and driving progress in the field of rare diseases. ❞
❝ I am honoured to be a part of the MENA Congress for Rare Diseases. This event brings together experts, researchers, and advocates dedicated to advancing the understanding and treatment of rare diseases. I look forward to sharing insights on neurodevelopmental and behavioral aspects, contributing to the collective effort to improve the lives of individuals and families affected by these conditions.
Look forward to meeting you all and celebrating each one’s uniqueness!
❝ It is of my distinctive pleasure to be a part of the outstanding meeting of Rare Diseases in the MENA region. One of the Charitable aims of this meeting is to promote health and quality of life for patients suffering of Rare Diseases especially in our MENA region. The main goal of this unique meeting is bringing together best professionals to develop a comprehensive educational impact for physicians, healthcare providers and families, spread awareness that will facilitate diagnosis and management, propagate science, share experiences, collaborate and discuss the recent advances for different themes concerning Rare Diseases. ❞
❝ The MENA Congress for Rare Diseases aims to advance knowledge, foster collaborations, and champion the cause of those affected by rare diseases in the Middle East and North Africa region.
❝ MENA Congress for Rare Diseases is a big campaign and a great opportunity for all physicians to know about the rare diseases and the most updated knowledge in the field, which will increase the awareness among them and early referral for specialized physicians ❞
❝ Taking care of patients with rare diseases present an immense challenge to the healthcare providers; the key to successfully managing these thought-provoking patients is a multi-disciplinary team approach.
From my previous attendance of the rare diseases annual meetings, this provides an outstanding and an excellent platform to learn from experts in different several medical arenas and an ample opportunity to network with experts in the field that will help us managing these patients.
❝ In 2023, Special Olympics UAE had the opportunity to conduct Unified Healthcare training at the MENA Congress for Rare Diseases. This occasion gave us the privilege to train a total 40 medical staff from different healthcare providers across the UAE. I invite all patient interfacing staff to attend this training, as it is extremely important to deliver compassionate healthcare for people of determination when going to doctor appointments. ❞
❝ I am thrilled to participate as a Palestinian certified music therapist and parents' counselor in the MENA Congress for Rare Diseases. My active contributions underscore the transformative influence of music therapy on patients with rare diseases. Additionally, my work involves guiding parents of children facing these challenges, ensuring a focused approach that caters to their distinct needs and cultivates a nurturing support system. I eagerly anticipate engaging with parents, attentively addressing their needs, and participating in insightful discussions with fellow professionals on effective strategies for working with rare diseases. ❞
❝ The MENA Congress for Rare Diseases is the largest genetics, metabolic, and genomics meeting in the region. It provides a wide variety of symposia, workshops, and lectures, discussing the latest ground-breaking discoveries and cutting-edge science in all areas of clinical and metabolic genetics. It also offers new collaboration, opportunities, and networking events among leaders in patient care, research, and other professionals from the region and internationally. ❞
❝ When I attended the MENA Congress for Rare Diseases last year, I appreciated the opportunity to listen to many industry professionals. I also saw the need for parents to share their experiences on this platform. This year, I am privileged to raise awareness of rare diseases and how they might relate to autism - from my own case study - my son. Never before have I experienced such an opportunity to share the stage with another parent and specialist pediatric professionals. I hope that medical professionals, advocates and families take this opportunity to come to ask their questions at this special session. ❞
❝ The MENA Congress for Rare Diseases is a big event which provides a great opportunity for healthcare professionals, patients, and their families to raise awareness, and to share the most updated knowledge about rare diseases. This meeting is an important platform to provide support to individuals and parents with rare genetic diseases and to share experience, learn, and network with experts in the field from all over the world. ❞
❝ As a parent of a child with Angelman syndrome, I understand the struggles and challenges that come with navigating the journey of finding treatments and obtaining a proper diagnosis. It took a significant amount of time for us to adjust to this reality. However, through perseverance and the support of organizations like yours, we have been able to find hope and valuable resources. Attending the MENA Congress for Rare Diseases will be instrumental in our journey. It will provide us with the opportunity to gain knowledge about the latest advancements in the field, connect with other families facing similar challenges, and find support within a community that understands our unique experiences. The congress will truly become a beacon of hope for us, and I am excited to share this enthusiasm with others. By sharing my story and experiences at the congress, I hope to inspire and encourage delegates to attend. Together, we can create a stronger network of support, raise awareness, and advocate for improved treatments and resources for rare diseases. ❞
❝ The MENA Congress for Rare Diseases stands as a crucial and highly consequential event within the sphere of rare diseases. Its overarching goal is to convene a cadre of experts wielding specialized knowledge, thereby injecting unique insights into the challenges and advancements associated with rare blood disorders. This collective effort
significantly enhances the overall depth and diversity of the discussions. This assembly serves as a hub, bringing together a diverse range of stakeholders committed to advancing the understanding and treatment of rare diseases within the MENA region. They form a dedicated community focused on driving progress in the comprehension and management of these rare diseases. It is with great honor and enthusiasm that I embrace the opportunity to partake in this transformative journey. This congress serves as a dynamic platform for fostering connections, igniting innovation, and propelling substantive progress in the field of rare diseases. Through collaboration and shared expertise, we aspire to make meaningful strides that resonate beyond the confines of this event, positively impacting the landscape of rare disease research and treatment. ❞
Professor Ayman El-Hattab
MD, FAAP, FACMG
Chairman, MENA Congress for Rare Diseases
Professor, College of Medicine, University of Sharjah
Consultant Clinical Genetics at Kanad Hospital, Genesis Healthcare Center, and University Hospital Sharjah
A disease is considered rare if it has a prevalence of less than 1 in 2000. Recent studies indicate that there are more than 10,000 different rare diseases. Although they are uncommon individually, collectively they affect more than 5% of the population. Unfortunately, only 5% of rare diseases have available therapies.
The Middle East and North African (MENA) region includes more than 20 countries with an area of 15 million square kilometers and more than 600 million population. This region shares cultural factors causing higher prevalence of rare diseases such the common practices of large family size, high maternal and paternal age, and high consanguinity rates. People with rare diseases in our region face significant challenges including limited knowledge about their diseases, long diagnostic journey, and inadequate clinical management and support.
MENA Congress for Rare Diseases will be held in Beach Rotana, Abu Dhabi, United Arab Emirates from 16 to 19 May 2024. This conference will be the largest event for rare diseases in the region and will last for 4 days during which more than 100 speakers, including more than 30 international experts, will give the most updated knowledge in more than 100 presentations, workshops, and group meetings in various fields related to rare diseases. The meeting will also accept abstracts related to rare diseases, and the best submitted abstracts will be presented orally and receive awards. Other abstracts will be presented as posters.
This conference is a unique platform that brings all parties involved in rare diseases to one place to obtain the most updated knowledge, increase awareness, exchange experience, advance research, establish networks, explore collaborative opportunities, and provide better care for individuals with rare diseases.
We look forward to seeing you among us at the MENA Congress for Rare Diseases.
Embrace the opportunity to share your groundbreaking research and discoveries in the realm of rare diseases! Anyone from all walks of expertise are invited to submit their abstracts for consideration. Whether your expertise lies in clinical case descriptions, cutting-edge diagnostic tests, therapeutic breakthroughs, or other facets of rare disease research, we encourage you to contribute.
The top 5 abstracts will not only receive prestigious recognition by presenting during the abstract session, but also stand a chance to secure financial awards. For those whose abstracts take the form of posters, there’s a chance to shine as well!
Mark your calendar - the abstract submission deadline is December 31 2023. Don’t miss this chance to be part of an exceptional event that celebrates innovation and excellence in rare disease research. Your contributions matter, and the world is eager to learn from your insights.
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 31 December 2023.
The 5 winner abstracts will be announced on 30 January 2024.
Utility of artificial intelligence in rare diseases
Recent research in the field of rare diseases
Regional experience and achievements in rare diseases
New therapies for rare diseases
Updates on diagnostics for rare diseases
Latest advancements in rare diseases
Medical and surgical management for rare diseases
Innovative rehabilitative therapies for rare diseases
Psychological support for rare diseases
Challenges in rare diseases: access to orphan drugs and insurance coverage
Registries for rare diseases
Patient advocacy for rare diseases
Autism and rare diseases
Rare diseases in neurology, cardiology, pulmonary, nephrology, ophthalmology, oncology, hematology, genetics, and metabolic
Specific rare diseases: Duchenne, Angelman, CDKL5, Huntington, Alkaptonuria, and neuroimmune diseases
Training for medical professionals to provide compassionate healthcare to people of determination
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
Support and advocacy groups