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Nedirot by 8400 was founded to accelerate collaborations and bridge gaps to create an effective ecosystem in Israel for rare diseases. Our goal is to improve the Israeli epidemioigical understanding, diagnosis, treatment options, disease management, and policy. Ultimately, to better serve People Living with Rare Diseases (PLWRD) and their families.

What is a rare disease? A rare disease is a disease that affects less than 0.5% of the population. There are about 7,000 rare diseases. Together, People Living With Rare Diseases (PLWRD) represent ~6% of the population. In Israel, this translates into more than half a million people.

What is the problem? PLWRD in Israel are facing numerous challenges, from unclear, delayed diagnosis, through identifying experts and existing treatment options, to the heavy burden the family must commerce throughout the patient journey. The unique genetic data of of the Israeli population is not and cannot be captured in the medical informatic systems that are used today. This leads in many cases to misunderstanding of the true country landscape. In many cases, the reasons for this hardship are due to the rarity of the disease, which makes the healthcare professionals unfamiliar with it, and often because there is also no approved treatment available. In some instances, PLWRD may fall outside the insurance plans even if there is therapy.

Creating one aligned strong cross-functional group that includes stakeholders, governmental officials of MoH, MoF, HCPs,  industry, scientists and the PLWRD community can addres the challenges of rare diseases and can lead to breakthroughs for PLWRD and their families.

Why is this important? We strongly believe that enabling PLWRD and their families to be an integral part of society is a fundamental right for a healthy community. We also believe that understanding rare diseases could contribute to unlocking the mechanism of action of other complicated diseases, and can be the foundation of new healthtech companies that could develop better diagnostics, more treatment options, and disease management tools. A comprehensive understanding of the genetic and epidemiological ecosystem, can help Israel make better fundamental decisions.

Why now? The United Nations formally adopted a resolution addressing the challenges that over 300 million PLWRD and their families live with. In recent years about 40% of the newly approved drugs are for treating rare diseases. Governments incentivize companies that develop drugs for rare diseases in the USA, Europe, and Japan. In recent years, we also see the dissemination of technological barriers; with the reduction of prices for genomic sequencing, the introduction of AI and ML, and digital technologies into the healthtech industry. We thus think there is now a window of opportunity to significantly improve diagnosis, disease management, and treatment of PLWRD.

Nedirot by 8400 is an experienced group of cross functional executives whom are advancing several projects in rare diseases in collaboration with the Israeli Minister of Health, Israeli HMOs,  Patient Advocacy Groups, clinicians and researchers working in rare diseases, and industry players, to ensure we better serve PLWRD and their families.

For further information please contact nedirot8400@gmail.com

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