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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From Social media
News about Rare-X from their social media (Facebook and X).
- Rare-X
- 2023-10-05
🌟 Exciting News. 🌟 Let's extend a warm welcome to 8 incredible patient advocacy groups who have joined the RARE-X platform this month. (tw) ... more
Liked (7) Commented (2)
- Rare-X
- 2023-09-21
A great quote from our Users Forum. “Advocate for yourself in the doctor’s office using data. (tw) ... more
Liked (3) Commented (1)Discussions
Odpovědí v diskuzi
1
1. How can RARE-X enhance patient empowerment in data sharing to facilitate breakthroughs in rare disease research?
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Brooklyn Simmons
2 days ago
Odpovědí v diskuzi
1
2. What strategies can RARE-X implement to ensure inclusivity and representation for diverse patient populations in its data collection efforts?
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Brooklyn Simmons
2 days ago
Latest reviews
Together, we can make a real impact in communities around the world. Help us bring hope and support.
So excited to see how RARE-X is empowering patients to share their data! This initiative is a game-changer for rare diseases and will truly accelerate research and treatment breakthroughs. Let's support this amazing movement! #PatientPower #RareX
Brooklyn Simmons
Product Manager
Kudos to RARE-X for creating a platform that gives a voice to patients facing rare diseases. Together, we can make a difference and drive real progress towards treatments and cures. Proud to follow this important work! #DataForGood #RareDiseaseAwareness
Brooklyn Simmons
Product Manager
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