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Saudi Rare Disease Summit: Advancing Research and Treatments

Saudi Arabia is hosting the 3rd Rare Disease Summit, bringing together a host of experts from across the world to explore the area of rare diseases.

Taking place in Riyadh, from January 31 to February 1, 2025, the 3rd Saudi Rare Disease Summit discusses various topics, including exploring the role of artificial intelligence (AI) in early detection and innovative therapies for rare diseases.

Rare Disease Summit 2025

Organized by Saudi Pediatric Neurology Society (SPNS) and Maarefah Management, the 3rd Saudi Rare Disease Summit is gathering more than 200 esteemed local, regional and international experts to share their knowledge in the field of Rare Disease.

Moreover, the summit acts as a platform to strengthen cooperation among diverse stakeholders, such as researchers, clinicians, caregivers, and policymakers to explore more ways to optimize patients’ care.

Furthermore, the 3rd Saudi Rare Disease Summit creates a friendly environment for engaging and empowering rare disease multidisciplinary teams, allowing them to share their perspectives on rare diseases research and care, in addition to underscoring the importance of a holistic approach to rare disease management.

The Summit’s Agenda

The summit’s agenda covers a wide range of topics related to rare diseases. These include cutting-edge research, patient-centric approach, and innovative therapies and treatments.

In a press release, the consultant pediatric neurologist at King Saud University and president of the SPNS, Prof. Fahad Al Bashiri, said: “The two-day leading summit stands out as a platform for sharing the latest advancements in rare disease management.”

He added that experts “will explore innovative approaches to diagnosis, treatment, and patient care, and insights from local and regional experts to enhance the knowledge and practices of participants.”

Al Bashiri also noted that “A key highlight of this year’s summit is a special session dedicated to empowering patients and families, and will focus on and discuss challenges they face and potential solutions stakeholders propose and the experts.”

What Are Rare Diseases?

Rare diseases are those which affect one out of every 2,000 people in the population, according to the Saudi Ministry of Health. Many of rare diseases are hereditary and discovered at birth. However, some of these rare diseases are genetic and do not appear until late.

Rare diseases are often chronic and progress over time to cause frequent health declines, posing a heavy burden on the patient and their family. Thus, rare diseases are considered a public health issue.

Rare diseases include mental illnesses, cardiovascular diseases, chromosomal diseases, skin diseases, infections, endocrines, urinary system diseases, and bone diseases.

Understanding Rare Diseases

The 3rd Saudi Rare Disease Summit offers a unique opportunity to identify innovative approaches to rare diseases diagnosis and management; and learn about the latest research, achievements and experiences in the field of Rare Disease from a distinguished team of regional and international experts.

Furthermore, it offers a platform to participate in interactive sessions to discuss cases of rare autoimmune disorders, rare diseases and methods of management, in addition to clinical problems encountered during medical practice.

In the light of this, the consultant in pediatric neurology at King Fahad University Hospital, Dr. Mohammed Al-Omari, said: “Rare diseases are rare, but together they affect millions, reminding us that every life matters. Each single condition may only affect a small number of patients, but collectively they constitute a large entity, touching families and communities.”

He pointed to the importance of raising awareness of rare diseases. “It’s important to raise awareness and work together to solve the challenges that face rare disease patients. Everyone with a rare disease deserves hope, care, and a better future,” he noted.

Rare Disease Day

In an effort to raise awareness of rare diseases, the world observes the Rare Disease Day on February 28 of each year, or February 29 on leap years.

Rare Disease Day aims to advance advocacy work on the local, national and international levels. It was set up by the European Organization for Rare Diseases (EURORDIS) and more than 65 national alliance patient organization partners in 2008.

Saudi Arabia introduced the Rare Disease Day for the first time in 2013. It aims to support people living with a rare disease by holding events, lectures and discussions for health care professionals and sharing patient stories.

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