Monthly Archives: February 2020

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Building a Network of Rare Specialists

Margo Shoup is a doctor on a mission. She moved from the Chicago area to Connecticut almost a year ago and has been the catalyst behind the creation of specialized disease teams targeting cancer care in a health system that covers an extensive area from western Connecticut up into the Hudson Valley of New York State.

By |2020-02-28T13:56:02-05:00February 28th, 2020|News, Newsletter|

Partnership for Survival – Treating the Rarest of the Rare

Our Rare Disease Day offering is a whitepaper titled 'Partnership for Survival – Treating the Rarest of the Rare' detailing how a collaboration with the NIH has become a model for other advocacy groups and researchers.

By |2020-02-28T14:30:39-05:00February 27th, 2020|Advocacy, News, Research|

Priority Review Granted for Ripretinib

Deciphera Pharmaceuticals announced today that the U.S. Food and Drug Administration (FDA) has accepted their New Drug Application (NDA) for ripretinib for Priority Review. Ripretinib is an investigational broad-spectrum KIT and PDGFRa inhibitor for the treatment of patients with gastrointestinal stromal tumors (GIST).

By |2020-02-14T09:57:21-05:00February 14th, 2020|Drug Treatment, News|

NCI Mentions LRG as Component in Development of Ayvakit

In a new article from the NCI concerning the January 2020 approval of Ayvakit, (produced by Blueprint Medicines) the Life Raft Group is acknowledged in the section, “Capturing the Patient Experience.” We are proud to have played a role in supporting the research involved in bringing a new treatment to market for GIST patients.

By |2020-02-07T14:23:48-05:00February 7th, 2020|D842V, Drug Treatment, News, Patient Registry|
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