Rare-X
PATIENTS' DATA POWERING PROGRESS - RARE-X is expected to become the largest data-sharing initiative focused on rare diseases. More to come............. PATIENTS' DATA POWERING PROGRESS. RARE-X is expected to become the largest data-sharing initiative focused on rare diseases. As a grant-supported nonprofit, RARE-X was created to support the acceleration of disease understanding. Follow us here. RARE-X is a 501(c)(3) non-profit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology.We are piloting a series of demonstration projects, partnering with rare disease communities, to apply technology proven in other large-scale public health and genomic data-sharing initiatives to support the global needs of those developing treatments and caring for rare disease patients. Also, we are leveraging existing technology powered by the Broad Institute of MIT and Harvard, which will support patients (in data collection, structuring and responsible sharing), clinicians (in accelerating diagnosis and improving and tracking health outcomes), researchers and biopharma (with the data they need to identify, develop and track the impact of breakthrough treatments and cures).Additionally, we are adapting proven technologies and partnering with leading experts to create a federated data analysis platform, specifically designed by rare community leaders and
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RARE-X – Patient's Data Powering Progress PATIENTS DATA POWERING PROGRESS RAREX a research program of Global Genes provides a collaborative platform for global data sharing and analysis to accelerate treatments for rare disease. RAREX a research program of Global Genes provides a collaborative platform for global data sharing and analysis to accelerate treatments for rare disease. Patients often struggle to gather access and share data that could lead to real breakthroughs RAREX equips patients to share their data with global researchers clinicians and drug developers We believe empowering patient communities as data stewards benefits all rare disease stakeholders. Scaling and Systematizing data collection will accelerate future treatments and cures HOW CAN WE HELP.
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Alliance/Advocacy Organizations Category
Organisations with similar rank to Rare-X in category Alliance/Advocacy Organizations
179. TEAM CAMPBELL FOUNDATION INC
We improve the lives of families impacted by childhood cancer by raising awareness, funding research and providing enrichment opportunities that enhance their journey and give them hope today.
PATIENTS' DATA POWERING PROGRESS.
182. BRAIN INJURY ALLIANCE OF CONNECTICUT INC
Raising voices and visibility, and improving lives through support, education, and advocacy.
183. Facial Pain Advocacy Alliance Inc
Face Facts provides up to the minute information on current facial pain diagnoses & treatments, online support groups, and Facial Pain Awareness graphics.
Washington
Organisations from Rare-X
2594. City Kids to Wilderness Project Inc
City Kids Wilderness Project provides extraordinary outdoor adventures, leadership development, year-round enrichment, and academic support for DC youth.
PATIENTS' DATA POWERING PROGRESS.
2596. Society for Glycobiology
The Society for Glycobiology aims to promote knowledge & stimulate interdisciplinary communication re: the study of carbohydrates in biological systems.
The Amara Legal Center provides free legal services to survivors of sex trafficking and sex workers.
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Juvenile Diabetes Cure Alliance
We are a 501(c)(3) nonprofit dedicated to achieving a type 1 diabetes Practical Cure within 15 years Support the fight for a cure: https://oclp.
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Our mission is to end Duchenne.
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The Luminesce Alliance is a world-leading paediatric research co-operative, established to harness the strengths of its partner organisations to unlock future prevention, treatments and ultimately, cures, for childhood illnesses.
BEACON: FOR RARE DISEASES LTD (uk)
Beacon is a UK-based charity that is building a united rare disease community with patient groups.
Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare an.
Australian Genomic Cancer Medicine Centre Limited (au)
Facilitating, supporting, and promoting clinical trials in genomic cancer medicine.
CANADIAN ORGANIZATION FOR RARE DISORDERS (CORD) (ca)
CORD is Canada's national network for organizations representing all those with rare disorders.
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Malaria No More envisions a world where no one dies from a mosquito bite.
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Nothing About Us Without Us.
THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC
Our mission is to end Duchenne.
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The Adult Vaccine Access Coalition has come together to raise awareness, improve access, and increas.
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We unite runners of all abilities to provide a fun team training environment.
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Ignite inspires the passion of yoga while supporting the growth of a consistent practice by providing a fun atmosphere that allows you to • Reconnect with inner and physical self • Promote a healthy lifestyle • Connect the community.
PATIENTS' DATA POWERING PROGRESS.
SJCOG serves as San Joaquin's transportation planning, coordinating, and financing agency and overse.
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7107. SAVING GRACE PERISHABLE FOOD RESCUE
Saving Grace is a perishable food rescue and delivery nonprofit agency servicing the Greater Omaha area.
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7109. JOE TORRE SAFE AT HOME FOUNDATION
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Join the movement to protect wild Florida.
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