Coalition of Rare Diseases in Israel
We Have a Rare Mission
The Coalition of Rare Diseases in Israel is an umbrella organization that unites dozens of associations, organizations, and parent groups, each representing patients with a different rare disease. The coalition is dedicated to promoting awareness, advocacy, and systemic solutions for all rare diseases in Israel.
The coalition's areas of activity focus on raising public awareness, promoting public policy and governmental engagement, establishing a national registry, developing and strengthening medical centers specializing in rare diseases, and supporting the member organizations within the coalition. It is estimated that around half a million people in Israel suffer from a rare disease. The rarity of these conditions often limits public awareness and creates significant challenges for families coping with them.
Ms. Orly Dror Azuriel, Chairperson of the A-T Fighting Association, has taken the lead in coordinating the coalition’s efforts. The coalition initially operated under the Israeli Patient Rights Association and was formally registered as an independent non-profit in 2022. By fostering connections between individuals, families, and patient groups, the coalition ensures that the voices of patients are heard and represented.
Objectives and Areas of Focus
The coalition’s goals include advocating for legislation that provides statutory recognition of rare diseases, establishing a national registry to enable systematic collection of epidemiological data, and assisting in the creation of specialized medical centers for rare disease treatment. In addition, the coalition is working to include rare diseases in the capitation mechanism, ensuring appropriate funding for health funds based on the number of patients affected by these conditions.
The coalition also promotes research to develop new treatments, offers training and support systems for member organizations, and fosters international collaborations with organizations such as EURORDIS and RDI.
Key Achievements
1. Establishment of a National Rare Diseases Registry: After years of persistent advocacy, in 2024 the Israeli Minister of Health signed regulations allowing the creation of the national rare diseases registry. For the first time, this registry will enable systematic data collection on rare disease patients, helping to identify trends, plan medical services, and advance research in the field.
2. Development of Specialized Medical Centers: The coalition has driven the establishment and expansion of specialized clinics for rare diseases, including centers in Afula and Soroka. These clinics provide multidisciplinary and tailored care for rare disease patients, improving access to advanced medical services.
3. Legislation and Definition of Rare Diseases: The coalition initiated and promoted a bill to legally recognize rare diseases, defining them as conditions affecting fewer than 1 in 10,000 people. This definition serves as a foundation for resource allocation, medical service planning, and the protection of patients' rights.
