Startups
PATIENTS' DATA POWERING PROGRESS. RARE-X is expected to become the largest data-sharing initiative f
Overview
Location
United States, California, Aliso Viejo
Employees
1-10
Founded date
2020
Mentions in press and media 22
| Date | Title | Description |
| Sign up to see | Sign up to see | Sign up to see |
| Jun 13, 2024 | Global Gene's RARE-X and Sleep Consortium Launch Sleep Data Collection Initiative to Accelerate Development of Therapies | Global Genes The Sleep Data Collection Initiative, the first consortium on the RARE-X platform for the collection and sharing of patient-owned data, brings together patient advocacy organizations, researchers, and drug developers looking to... |
| May 31, 2023 | Global Genes’ RARE-X Issues Open Call to Researchers to Participate in the Inaugural Xcelerate RARE Challenge | We're bringing together researchers and data scientists, many of whom don’t normally work on these rare diseases. Teams will have the opportunity to collaborate and vet analytical approaches and therapeutic strategies. - Karmen Trzupek... |
| Feb 7, 2023 | 2022 was a breakthrough year for understanding rare diseases. 2023 needs to be better | Major advances in the study and treatment of rare diseases occurred in 2022, from a better understanding of just how many of these diseases exist to the start of new clinical trials that may lead to new therapies. For the last decade or so,... |
| Feb 7, 2023 | Global Genes Announces Completion of RARE-X Merger and Strategic Direction for Combined Organization | “The combination of Global Genes and RARE-X provides individuals, families, and advocates with an integrated set of essential services to help them raise support and awareness, accelerate the development of treatments, and power those effor... |
| Jan 17, 2023 | RARE-X to Launch an Open Science Data Challenge to Address Rare Neurodevelopmental Diseases | “This challenge should demonstrate to researchers, drug developers, and patient advocates that people today are already using our data platform to unleash a new understanding of rare diseases to drive improvements in the diagnosis and treat... |
| Jan 13, 2023 | RARE-X and CoRDS Collaborate to Improve Patient Outcomes for Rare Diseases | “By collaborating with RARE-X, we can help ensure we can support expanded data collection and interoperability between existing CoRDS registries and RARE-X,” said Dr. David Pearce, president of Sanford Research. WASHINGTON (PRWEB) January 1... |
| Apr 29, 2022 | Undiagnosed Patient Organizations Begin Leveraging RARE-X | "we're very fortunate to have partners like RARE-X, who have a similar vision of a scalable, more equitable collaborative future for all healthcare starting with the ultra-rare, starting with the undiagnosed,” said Cristina Might,... |
| Apr 7, 2022 | RARE-X Study Delivers Insights for Diversity, Equality, and Inclusion Programs | “The goal of this study was to identify strategies that different organizations can use to ensure diversity, equity, and inclusion is built into their programs,” said Teneasha Washington, diversity, equity, and inclusion lead for RARE-X and... |
| Feb 22, 2022 | Addressing Massive Health Inequities on Rare Disease Day | February 28 marks Rare Disease Day. Rare diseases affect an estimated 350 million people globally spanning more than 7,000 known conditions. Every year, approximately 200 new rare diseases are discovered because new disease-associated genet... |
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FAQ about RARE-X
When was RARE-X founded?
RARE-X was founded in 2020.
What has the press written about RARE-X?
Parsers VC has collected 22 articles mentioning RARE-X, among them “Global Gene's RARE-X and Sleep Consortium Launch Sleep Data Collection Initiative to Accelerate Development of Therapies” (Jun 13, 2024) and “Global Genes’ RARE-X Issues Open Call to Researchers to Participate in the Inaugural Xcelerate RARE Challenge” (May 31, 2023).
Is RARE-X still active?
Yes, RARE-X is active; its latest activity on Parsers VC dates from Jul 17, 2024.