-
Mashup Score: 12Get to Know NORD’s New CEO: Four Questions with Pamela Gavin - National Organization for Rare Disorders - 2 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
-
Mashup Score: 6
We are committed to innovation in clinical trials which puts patients at the heart of our research. Learn more here.
Source: www.astrazeneca.comCategories: General Medicine News, PayerTweet
-
Mashup Score: 10Taming the Immune System When Rare Diseases Strike - 2 month(s) ago
Therapies for rare autoimmune diseases are progressing with an enhanced understanding of how the immune system misfires to cause cell, tissue, and organ damage.
Source: www.genengnews.comCategories: General Medicine News, Future of MedicineTweet
-
Mashup Score: 10Taming the Immune System When Rare Diseases Strike - 2 month(s) ago
Therapies for rare autoimmune diseases are progressing with an enhanced understanding of how the immune system misfires to cause cell, tissue, and organ damage.
Source: www.genengnews.comCategories: General Medicine News, Future of MedicineTweet
-
Mashup Score: 10Taming the Immune System When Rare Diseases Strike - 2 month(s) ago
Therapies for rare autoimmune diseases are progressing with an enhanced understanding of how the immune system misfires to cause cell, tissue, and organ damage.
Source: www.genengnews.comCategories: General Medicine News, Future of MedicineTweet
-
Mashup Score: 6Misunderstood: Raising my voice and awareness for those who are rare - 2 month(s) ago
One word to describe a patient living with a rare disease is misunderstood. Rare diseases are a severe, chronic, degenerative, and often life-threatening group of conditions.
Source: globalgenes.orgCategories: General Medicine News, NeurologyTweet-
We heard from Susanne, a rare patient diagnosed with 2 #RareDiseases, her journey to diagnosis, and periods of feeling isolated. “In sharing my story, I hope to shed light on others who are suffering in the darkness looking for answers…” Read her story: https://t.co/MfbhMw5zmq https://t.co/M1vh3ukAnh
-
-
Mashup Score: 24Congress: Reauthorize the Rare Pediatric Disease Priority Review Voucher Program - National Organization for Rare Disorders - 3 month(s) ago
As many as half of all people living with a rare disease are children, and rare pediatric disease priority review vouchers (PRVs) offer a crucial incentive
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
-
Mashup Score: 8Rare Disease Hackathon 2024 - 3 month(s) ago
Harvard Undergraduate Biotechnology Club In the context of the United States, a rare disease is a condition that affects fewer than 60 per 100,000 Americans. Over 7,000 diverse rare diseases have been identified so far. Some, such as ALS (remember the Ice…
Categories: General Medicine News, Rare DiseaseTweet-
From March 2-3, the @Harvard Undergraduate Biotechnology Club is hosting the Rare Disease Hackathon 2024! Open to all U.S. undergrad & grad students, explore computational approaches to #RareDiseases harnessing the power of open science & genomic data: https://t.co/iu9ixsbMIv https://t.co/iwaSRotWT7
-
-
Mashup Score: 0Alexion - 4 month(s) ago
Alexion is a global biopharmaceutical company focused on developing life-changing therapies for people living with rare disorders.
Source: alexion.comCategories: General Medicine News, PayerTweet
-
Mashup Score: 3IRDiRC Consortium Assembly Meeting 2023 - Montreal, Canada - 5 month(s) agoSource: www.youtube.comCategories: General Medicine News, NeurologyTweet
Today NORD celebrates 41 years! 🎉🦓 We look forward to continuing to improve the lives of everyone with #RareDiseases and those who love us by driving advances in care, research, and policy - under the leadership of new CEO, Pamela Gavin! Read more: https://t.co/sWWvMiZTv6 https://t.co/HJrAouRYdj