The Chan Zuckerberg Initiative launches a new program to support rare disease patients

The Chan Zuckerberg Initiative launches a new program to support rare disease patients

REDWOOD CITY, CALIF. Today, Chan Zuckerberg Initiative (CZI) announced a new program aimed at supporting and raising the work being done by patient communities to accelerate research and stimulate progress in the fight against rare diseases. With guidance from patient communities, rare disease experts, and advocacy organizations, this new Rare Project – will help patients, researchers and clinicians work together to progress progress. against their disease and scaling these efforts through capacity of construction services and up to $ 4.5 million of initial funding.

There is only a rare disease: up to 7,000 rare diseases affect 400 million people worldwide. In the US, a rare disease is defined as a condition affecting less than 200,000 people. Most of these diseases are poorly known, and the FDA has approved therapy at less than five per cent. The knowledge and learning of patients suffering from these diseases is critical to advancing research and treatment, but this progress is continuing with a lack of funding and infrastructure to support such research. that led patients.

"Patients are a critical part of the solution to finding medicines for their diseases – particularly when it comes to rare diseases, most of which are not understood," said Priscilla Chan, CZI Co-founder & Joint CEO. “We hope, through partnership with the rare disease community, that we can help patients and patient-led organizations to make progress that delivers almost exclusively those in disease areas – but which accelerates wider research discoveries. "

In the first phase of the Rare One Project, CZI is inviting patient led organizations, 501 (c) (3) to apply for a new two year grant to support the development and launch of research networks in their rare disease. area – in partnership with clinicians and researchers. Through the R One Rare Applications Application (RFA), CZI will provide funding, training, community mentoring, and capacity building services for up to 10 patient organizations, and will ask each other to share feedback and learn. from them. and how best to address the most pressing needs across a spectrum of rare diseases. Read our Medium post to learn more.

"A small number of growing organizations on rare diseases are progressing well and are proving to be very successful," said Tania Simoncelli, CZI's Director of Science Policy and Head of Rare As One Projects. "These efforts led to the development of new disease models, diagnostic criteria, drug goals, clinical trials, and – in some cases – new approved therapies in very short timeframes. The disease community."

Since December 2017, CZI has made a number of learning grants in the rare disease space. These include:

  • Rare Cancer Research Foundation, $ 249,600 (2018) t
    • enables patients to guide rare cancer of tumor tissue to cancer research. This grant supports Pattern efforts to extend its functionality and capacity to directly employ patients in research.
  • Castlebar Disease Co-operative Network: $ 406,640 (2019) t
    • Castleman Disease Cooperation Network accelerates research to cure Castleman's disease and improve the survival of all patients. This grant supports the development of software tools and infrastructure that will enable other patient organizations to create and facilitate collaborative patient-led research networks.
  • World Genes: $ 1,249,480 (2019) t
    • Global Genes is a global non-profit advocacy organization for individuals and families fighting rare and genetic diseases. This grant supports the development and dissemination of interactive educational materials and workbooks to assist rare disease patients and advocacy organizations in understanding and activating patient-led research groups and data programs.
  • Rare Genome Project, MIT and Harvard Wide Institute: $ 749,287 (2019)
    • The Rare Genome Project enables patients who are suspected of genetic conditions to participate in genomic research as partners, to transform genomic data into clinically sensible responses. This grant will support the piloting of a pilot approach to engagement, recruitment, and return of diagnoses for rare disease families.

The RFA will adopt a Rare As Only Network of Interest Letters starting at 9 o'clock in Pacific time on Tuesday, June 11, 2019 to 5 pm. Pacific Time Tuesday, July 23, 2019. For more information and implementation instructions, please visit the CZI website. For administrative and program queries, technical assistance, or other issues related to this RFA, please contact

About Chan Zuckerberg Initiative

Founded by Dr.. Priscilla Chan and Mark Zuckerberg in 2015, the Chan Zuckerberg Initiative (CZI) is a new type of philanthropy that encourages technology to solve some of the most difficult challenges in the world – from disease eradication, education improvement and criminal justice system reform. . Across the three key areas of Science, Education and Justice & Opportunity focus, we are matching engineering to grant-giving, impact investment, and policy and advocacy work to help build a comprehensive, fair and healthy future for all. For more information, visit

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