❝ It a great privilege to take part of this year’s MENA Congress for Rare Diseases to highlight the importance of identifying markers for rare comorbid manifestations of autism in primary healthcare. Although Autism itself is not considered a rare neurodevelopmental disorder, it is closely linked with several neurodevelopmental rare diseases. Therefore, early surveillance, detection, screening, and referral pathways are essential steps to lead to and inform an evidence-based diagnosis of Autism Spectrum Disorders. This presentation is a great opportunity to highlight the role of primary healthcare providers in early screening and identification of early signs of autism spectrum disorder, phenotypes, and behavioral symptoms is essential and instrumental in early identification of comorbid rare disease. It will also identify basic screening steps to indicate whether more in depth diagnostic assessment is advisable for further investigations of comorbid genetic and /or rare diseases leading to unlocking in-depth assessment and specialized medical and behavioral care pathways. ❞
❝ It is an honor to be part of the MENA Congress for Rare Diseases. The first step in tackling a disease is education. This conference creates a unique opportunity for clinicians working with children and families with rare diseases to come together and build on their individual wealth of knowledge by sharing with one another. As the name implies, there is limited information on rare diseases which puts families in a conundrum on how to best support their children. Attendance at this conference will give clinicians, stakeholders, researchers and families with loved ones with rare diseases up to date tools and information on how to tackle these challenges. Looking forward to seeing you all at what promises to be an exciting conference. ❞
❝ I have the privilege to be speaking at the MENA Congress of Rare Diseases, an event of immense importance that gathers experts and stakeholders dedicated to addressing the unique challenges presented by rare diseases. This congress provides a crucial platform for fostering collaboration, sharing knowledge, and bringing together diverse perspectives, from healthcare professionals and researchers to patient advocates and policymakers, all working towards a common goal of improving the quality of life to those affected of rare diseases. My speech will delve into the diagnostic complexities that healthcare professionals encounter, emphasizing the significance of early and accurate diagnosis for improved outcomes. Furthermore, I'll shed light on the current research landscape, treatment options, patient advocacy, regulatory frameworks, and global collaboration in the context of rare diseases. ❞
❝ 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 a speaker at the MENA Congress for Rare Diseases. Rare diseases have an impact not only on the patient but on the entire family. The success of campaigns in raising awareness and transforming attitudes towards Duchenne is essential for informing caregivers, organization of services, and overcoming barriers associated with Duchenne. Better support through raising awareness could lead to research and support services for Duchenne patients and their families. ❞
❝ 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. ❞
❝ Scientific forum about rare and orphan genetic conditions like the MENA Congress for Rare Diseases is one of the dynamic regional forces to enhance genetic and genomic knowledge among the professional health community. Such organized efforts are aligned with the National UAE strategic health policy towards enhanced genetic and genomic literacy, recognizing the important role of genetic counseling, and highlighting the significance of the genetic research in addition to uniting the patient’s advocates under one roof. ❞
❝ I am delighted to take part in this important event that will gather stakeholders and scientist from round the world to examine the effect of disease on the lives of those affected. As a professor of inclusive and education, and on behalf of the British University in Dubai, I am so looking forward to sharing knowledge and previous experiences in supporting improving the quality of life of people with rare diseases. ❞
❝ Excited to announce my role as both a speaker and moderator for an upcoming panel session at the MENA Congress for Rare Disease. Our discussion will focus on the "Challenges in Availability of Rare Disease Medications." As we navigate the complexities of rare diseases, I look forward to sharing insights, facilitating discussions, and collaborating with experts in the field. Together, let's address the crucial issues surrounding access to medications and work towards better solutions for those affected by rare diseases. Honored to be part of this impactful event. ❞
❝ It was a genuine honor to participate in last year's MENA Congress for Rare Disease. The event proved to be a tremendous success, effectively bridging the gap between patients, healthcare professionals, and experts across various sectors. Such gatherings play a pivotal role in nurturing an inclusive society and fostering greater awareness about rare diseases. The event's impeccable organization and the relevance of its topics were truly commendable, contributing significantly to the advancement of understanding and collaboration within the field. ❞
❝ The MENA Congress for Rare Diseases will be a testimony to the region’s interest in developing state of the art care, quality diagnosis, and dedicated infrastructure to assist those who suffer from rare diseases. The International Huntington Association completely resonates with the Congress’ program, and we encourage all of the community to participate in this meeting, as it will be an event that will showcase the best that the MENA Region has to offer. ❞
❝ The Global Nursing Network Rare Diseases (GNNRD) was formed in March 2023 bringing together nurses from across the globe to build capacity through connectedness, awareness, leadership and advocacy. I am excited to participate at the 2nd GNNRD meeting that will be conducted at the MENA Congress for Rare Disease. This meeting will provide an opportunity for participants to connect and co-design the framework for the GNNRD. ❞
❝ Elpida Therapeutics represents an ambitious commitment to developing novel gene therapies to address the unmet medical needs of children with rare diseases. Our diversified approach focuses on delivering AAV/transgene vectors for onetime gene therapy to patients. Our partners merge expertise in bench neuroscience, virology and immunology with clinical expertise in Pediatric Neurology with backgrounds in neuroimmunology, developmental delay, mitochondrial diseases, and rare neurological disease. As such, our success is a result of our ability to translate laboratory discoveries into advances in patient care. Partnering with MENA Congress for Rare Diseases is paramount to advancing these therapies in the region. We hope to develop strong collaborations and lasting relationships with the middles east rare disease community ❞
❝ 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 ❞
❝ It gives me a great pleasure to participate in this year's MENA Congress for Rare Diseases. As a surgeon, I will highlight in my presentation the surgical complications encountered in Alkaptonuria patients that require intervention. Specifically, I will focus on the management of intrahepatic, salivary, and renal stones. Addressing the surgical complications in Alkaptonuria patients is a crucial aspect of their overall management. ❞
❝ 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. ❞
❝ The Global Nursing Network Rare Diseases (GNNRD) was formed in March 2023 bringing together nurses from across the globe to build capacity through connectedness, awareness, leadership and advocacy. I am delighted to be invited to host the 2nd GNNRD meeting at this important Congress to amplify the voice of nurses and improve the lives of people living with Rare Diseases. This Congress presents an invaluable opportunity to connect with delegates, cultivate essential relationships and forge collaborations, and I eagerly await the knowledge exchange and collaborative endeavours that will ensue. ❞
❝ This year’s MENA Congress for Rare Diseases meeting will serve as host to the largest group of UAE-based genetic counselor speakers and panelists to date to be provided a platform to share valuable insights in this important field. ❞
❝ I look forward to contributing towards the MENA Congress for Rare Diseases which will raise awareness of rare diseases on a global platform. It will provide shared knowledge amongst healthcare professionals who work with children and families who have a rare disease. As a neuromuscular nurse specialist, I am committed to improving the lives of children living with a neuromuscular condition in New Zealand. I am looking forward to sharing my knowledge and experiences of working in this challenging field of nursing. ❞
❝ 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.
❝ 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. ❞
❝ Applied & Behavioral Training Institute is honored to be invited by the MENA Congress for Rare Disease to participate as a training provider. This gathering has proven to be an excellent opportunity for sharing knowledge, increasing awareness, and networking. Providing healthcare to patients with rare diseases can prove to be daunting; and the Unified Healthcare Providers Training workshop, conducted by us in partnership with Special Olympics UAE, will empower medical professionals to provide compassionate healthcare to people of determination. It will give the attendees the opportunity to participate free of charge and earn certificates as well as CMEs. The MENA Congress for RARE Diseases is one of the best events with a varied attendance of medical professionals, academic researchers, policy makers, and community leaders. This event is well curated and professionally executed. ❞
❝ Embark on a transformative journey in genetic healthcare by attending the MENA Congress for Rare Diseases, where pioneers converge to share insights. Recognizing the crucial yet often overlooked role of genetic counseling in our healthcare system, the Genomics Hub Ltd emerges as a groundbreaking online platform. As the first of its kind, Genomics Hub addresses the unmet needs, providing a comprehensive and accessible approach to genetic counseling. Explore this innovative initiative and join the conversation at the forefront of genetic healthcare advancement at the MENA Congress for Rare Disease. ❞
❝ 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. ❞
❝ 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. ❞
❝ It is my honor and privilege to welcome you all to the inaugural MENA Association for Genetic Counselor Annual Meeting 2024. I am thrilled to see so many dedicated professionals come together to share knowledge, insights, and experiences in the field of genetic counseling for the first time ever in the MENA region. Our field is at a pivotal moment, with advancements in genetic testing, personalized medicine, and genomic research opening up new possibilities for patient care. This meeting provides us with a unique opportunity to explore these developments, exchange ideas, and collaborate on ways to further enhance our practice in this region. ❞
❝ 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!
❝ Excited to be a part of the MENA Congress for Rare Diseases. Join me at this extraordinary event, where I will be sharing groundbreaking insights and experiences in the field. Let's come together to advance our knowledge, foster collaboration, and make a lasting impact on rare disease research and treatment. Don't miss the opportunity to connect, learn, and contribute to positive change in our community. Join us in this transformative journey!
❝ Knowledge and wisdom stemming from innovative research requires platforms such as this conference where improving the lives of those affected by rare diseases is the utmost goal of every participant. Prestigious scientific events like this one, whereby new horizons are explored, real-life experiences are shared and networks are established and expanded, is therefore eagerly welcomed. ❞
❝ Our region has a high burden of rare and genetic disorders. Despite more awareness there is still a prohibitive time line to diagnosis and management for most families. Scientific meetings, like MENA Congress for Rare Diseases, are pivotal in raising awareness, sharing regional data, networking with experts in rare diseases and engaging with all stakeholders. It is also important to develop our regional registries and the MENA Congress for Rare Diseases gives us a platform for getting everyone on board. The new era of understanding and treating diseases since the advent of next generation sequencing and gene therapy makes such events extremely important. ❞
❝ It is a true pleasure to be participating in the MENA Congress for Rare Diseases. This high impact annual meeting is an exceptional opportunity and a platform for networking and for the experts in the field to share their experiences. As a genetic counselor, I’m thrilled to know that this year’s meeting will have a dedicated genetic counseling pre-congress side meeting. This initiative is essential in highlighting the role of genetic counseling and to promote the profession which is becoming more and more an integral part of main stream healthcare. ❞
❝ For the advancement of coordinated research and clinical care for rare disease patients, regional collaboration is a highly effective and productive approach. The Middle East and North Africa (MENA) Congress for Rare Diseases serves as a pivotal platform in this region to foster alliances and cooperation for the improved care of rare diseases. With China bearing a substantial disease burden of rare disorders, affecting an estimated population of over 20 million, the country has implemented a comprehensive national strategy to systematically address this challenge. China has made significant strides in diagnostic and therapeutic technology innovation, patient advocacy, basic research, policy-making, and social welfare. I am honored to have the opportunity to share these experiences with a global audience and trust that these insights will bring valuable benefits to countries in the Middle East and beyond. ❞
❝ It was an honor to have participated in last year's MENA Congress for Rare Disease. The multidisciplinary scientific event was an effective platform for linking patients, care providers, doctors, nurses and other experts in the management of rare diseases across various patients care organizations. The event was successful in highlighting the impact of rare disease prevalence and exchanging knowledge and expertise in the management of those disease to the benefits of patients and families. Recent advances in the diagnosis and management of rare diseases with analysis of the impact and plan of change in care were presented adding to the value of the congress as an important regional venue for improving healthcare. It is a genuine honor and pleasure to participate in this year congress to provide an update on the impact of metagenomics on the management of rare diseases ❞
❝ There are significant challenges and opportunities in the diagnosis and management of individuals with rare diseases. The MENA congress for rare diseases provides an important platform to share information across rare diseases. In the muscular dystrophies, we are particularly excited for the development of gene replacement therapies in these conditions, providing hope for the future.
❝ MENA region has a high burden of rare and genetic disorders. There are various efforts by different stakeholders to increase awareness in this field. MENA Congress for Rare Diseases provides a platform for raising awareness of rare and genetic disorders among various health professionals. It also allows collaboration between different regional countries, paving the way for future impactful research. ❞
❝ 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 want to thank for the tremendous work on the organization of the MENA Congress for Rare Diseases and the success of the event. This was one of the best organized regional congresses I have ever had, and it involved diverse topics and organizations. ❞
❝ 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. ❞
❝ 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. ❞
❝ 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. ❞
❝ The MENA Congress for Rare Diseases is a gathering of all rare disease health practitioners and advocates from all over the world. As a frontline advocate for the rights of Filipino rare disease patients for decades, the Institute of Human Genetics is confronted with many challenges, and the conference is a venue for us to learn from speakers and participants the best practices and strategies in overcoming obstacles in taking care of patients with rare diseases. We hope to use this platform to share the Philippine experience in taking care of patients in both the clinical and community setting. Similarly, the conference is also an opportunity to network with agencies, organizations and support groups working for the comprehensive long term care of patients. This gathering will not only serve as an opportunity for learning but a moment of hope to strengthen the global network for rare diseases. ❞
❝ As the number of diagnosed patients continues to rise in the region, it has become increasingly imperative to guarantee the accessibility of life-altering treatments for patients in world-class medical facilities situated in close proximity to their families. Together, we have the potential to cultivate a global reality where one in every six children and their families are spared the disheartening revelation that nothing can be done or that a particular treatment is exclusively available in North America and beyond their reach. The MENA Congress for Rare Diseases serves as a platform that brings together esteemed global experts, fostering innovative thinking and collaborative efforts to ensure that these transformative treatments and cures are extended to patients in need, irrespective of their geographical location. By transcending conventional boundaries, Elpida Therapeutics aim to create a world where medical solutions are universally accessible, offering hope and healing to families around the globe. ❞
Professor Ayman El-Hattab
MD, FAAP, FACMG
Chairman, MENA Congress for Rare Diseases
Founder & President, MENA Organization for Rare Diseases
Professor, College of Medicine, University of Sharjah
Consultant Clinical Genetics at University Hospital Sharjah, Kanad Hospital, and Genesis Healthcare Center, UAE
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.
Utility of artificial intelligence in rare diseases
Recent research in the field of rare diseases
Regional experience and achievements in rare diseases
Challenges and opportunities in rare diseases
New therapies for rare disease
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
Access to orphan drugs
Insurance coverage for rare diseases
Registries for rare diseases
Autism and rare diseases
Rare diseases in neurology, cardiology, pulmonary, nephrology, ophthalmology, oncology, hematology, immunology, genetics, and metabolic
Specific rare diseases: Duchenne, Angelman, 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