Article: Open Source Joins Efforts to Create Gene Therapies for Rare Diseases

Cures, Drugs, Open Health, Procedures (Medical)

Open Source Joins Efforts to Create Gene Therapies for Rare Diseases

Some 400 million patients worldwide are affected by more than 7,000 rare diseases; yet treatments for rare genetic diseases remain an underserved area. More than 95 percent of rare diseases do not have an approved treatment, and new treatments are estimated to cost more than $1 billion.

Sanath Ramesh created the RareCamp project and the OpenTreatments Foundation to enable patients to create gene therapies for rare genetic diseases and then work with their doctors and nonprofit organizations to develop drugs. The Linux Foundation, the nonprofit organization enabling mass innovation through open source, is helping those efforts succeed.

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Article: Huma and RARE-X partner to accelerate research for 9,500 rare diseases

Access, Cures, Open Decision-Support, Open Health, Procedures (Medical), Research

Huma and RARE-X partner to accelerate research for 9,500 rare diseases

Huma, Europe’s fastest-growing health technology company, is partnering with the non-profit patient advocacy group RARE-X, which runs a collaborative patient-powered data collection platform for global data sharing and analysis to accelerate treatments for rare disease.

RARE-X’s federated data platform will pair with Huma’s decentralized clinical trials platform, complete with remote monitoring and digital biomarkers. Together, they will work closely with researchers, drug developers, and patient communities to gather data from anywhere in the world and make it easier for patients and their families to share data with researchers.

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