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Mashup Score: 9
PFA Opens May 7, 2024 Applicant Town Hall May 14, 2024; 12 pm (ET) Letter of Intent (LOI) Deadline June 4, 2024; 5 pm (ET) LOI Status Notification July 2, 2024 Application Deadline Sept. 4, 2024; 5 pm (ET) The Patient-Centered Outcomes Research Institute (PCORI) intends to issue a Topical PCORI Funding Announcement (PFA) on May 7, 2024, seeking to fund high-quality, patient-centered comparative clinical effectiveness research (CER) projects that focus on rare diseases. This preannouncement provides
Source: www.pcori.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 2Abstract Submission - NORD Rare Summit - 14 hour(s) ago
Submission deadline – June 12, 2024 NORD notifies authors of acceptance – July 23,
Source: nordsummit.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 2Familial Dysautonomia Foundation - 16 hour(s) ago
Website Disclaimer The information provided in the Dysautonomia Foundation web site is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualifi ed health professional. If you believe you, or your child, or someone you know, suffer from the conditions described herein, please see your health care provider. Do not attempt to treat yourself, your child, or anyone
Source: familialdysautonomia.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 6Rare Impact Awards - NORD's Rare Impact Awards - 2 day(s) ago
This very special event will celebrate NORD’s legacy and achievements, and honor those individuals and organizations doing remarkable work on behalf of the rare disease community.
Source: rareimpact.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 12Get to Know NORD’s New CEO: Four Questions with Pamela Gavin - National Organization for Rare Disorders - 4 day(s) ago
Her fierce approach to patient advocacy combined with her visionary thinking and healthcare background has driven many of NORD’s groundbreaking initiatives over the last decade. To help the rare disease community get to know Pam, we asked her four questions. Un fortunately, I have experienced firsthand the devastation of a child’s life gone too soon from a rare disease. My nephew Trevor was diagnosed at age two and died at the age of nine from metachromatic leukodystrophy, a rare and debilitating genetic
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 6Rare Impact Awards - NORD's Rare Impact Awards - 4 day(s) ago
This very special event will celebrate NORD’s legacy and achievements, and honor those individuals and organizations doing remarkable work on behalf of the rare disease community.
Source: rareimpact.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 13Living Rare Living Stronger - Rare Disease Patient Event - 4 day(s) ago
The Living Rare, Living Stronger NORD Patient and Family Forum will be a truly patient first event. Through it all, we will maintain our objectives: networking, education, inspiration, hope and fun!
Source: livingrare.orgCategories: General Medicine News, Rare DiseaseTweet-
NORD takes California! Join us on the West Coast for our 2024 Living Rare, Living Stronger Patient & Family Forum and #RareImpactAwards. Learn how you can participate in these convenings and celebrate the #RareDisease community on June 7-8 by visiting https://t.co/9gS7bfYNI5. https://t.co/pWJn7qoiTe
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Mashup Score: 6
We offer free flights for patients who otherwise couldn’t get to the medical care they need. Children or adults can fly and get the care they need.
Source: palservices.orgCategories: General Medicine News, Rare DiseaseTweet-
We joined NORD Member, PALS SkyHope, at their event in Boston about "Connecting Flights to Care." Long-time friend of NORD, @PALServices provides free air transportation to attend medical appointments more than a two hour drive from home. Learn more at https://t.co/o1rn78Mvzu https://t.co/LY4wXhPYCF
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Mashup Score: 13Living Rare Living Stronger - Rare Disease Patient Event - 4 day(s) ago
The Living Rare, Living Stronger NORD Patient and Family Forum will be a truly patient first event. Through it all, we will maintain our objectives: networking, education, inspiration, hope and fun!
Source: livingrare.orgCategories: General Medicine News, Rare DiseaseTweet-
NORD takes California! Join us on the West Coast for our 2024 Living Rare, Living Stronger Patient & Family Forum and #RareImpactAwards. Learn how you can participate in these convenings and celebrate the #RareDisease community on June 7-8 by visiting https://t.co/9gS7bfYNI5. https://t.co/pWJn7qoiTe
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Mashup Score: 22024 FOD/OAA Family Forum - 5 day(s) ago
HomePages Pittsburgh, Pennsylvania | June 28-29, 2024 2024 FOD/OAA Family Forum Registration on Eventbrite – Click Here Wyndham Hotel Reservations – Click Here Scholarship Request FOD/O…
Source: oaanews.orgCategories: General Medicine News, Rare DiseaseTweet
📢 New Research Grant Announcement! @PCORI's new Addressing Rare Diseases PFA offers up to $100M in available funding for patient-centered #CER projects on symptoms management, timely diagnosis, or improving care delivery for #RareDiseases. Learn more: https://t.co/z7aJco2BZq https://t.co/bgrTtTTsx9