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Mashup Score: 8GREGoR: Accelerating Genomics for Rare Diseases - 10 day(s) ago
Rare diseases are collectively common, affecting approximately one in twenty individuals worldwide. In recent years, rapid progress has been made in rare disease diagnostics due to advances in DNA…
Source: arXiv.orgCategories: General Medicine News, NephrologyTweet
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Mashup Score: 2Latent profiles and predictors of barriers to care in Swiss children and adolescents with rare diseases - 1 month(s) ago
AbstractObjective. Children and adolescents with rare diseases face significant barriers when accessing healthcare. We aimed to assess and predict these ba
Source: academic.oup.comCategories: General Medicine News, PediatricsTweet-
November issue: Key predictors like non-stable disease course and misdiagnosis significantly impact healthcare access for children with rare diseases in Switzerland. Full study here: #RareDisease @WehrSue @child_trauma @Andrew_A_Dwyer https://t.co/wzMuimojMJ
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Mashup Score: 5Holiday Care Packages 2024 - 2 month(s) ago
The holiday season is a particularly challenging time for rare disease patients, caregivers, and families who are constantly traveling away from home for medical appointments. Â To help brighten the days of our community members spending time in the hospital over the holidays, NORD is orga…
Source: donate.rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
We're creating holiday care packages for #RareDisease patients in hospitals and we need your help! Donate $ or purchase items from our Connecticut, Massachusetts, or Washington, D.C. gift registries here: https://t.co/63q1CDAJ4K Care packages will be distributed at NORD Rare… https://t.co/KhhM4nPGne https://t.co/Wr1knLnLtD
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Mashup Score: 4Home - Family Caregiver Alliance - 2 month(s) ago
Looking for quali ty information, support, and resources related to family caregiving? Sign up for CareNav, a free online dashboard loaded with personalized information that matches your unique caregiving needs. The mission of Family Caregiver Alliance is to improve the quality of the life for family caregivers and the people who receive their care. Find out more about our work. Find in-depth information and tips on a wide variety of caregiving topics. Learn important strategies for maintaining your own
Source: www.caregiver.orgCategories: General Medicine News, PayerTweet-
#RareDisease poses its own set of unique challenges for patients—this also extends to those who care for them too. But caregivers don’t have to do it alone. Check out https://t.co/f2wDpSZTdi for helpful resources https://t.co/njNztJ2TYo
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Mashup Score: 0
The FDA originally issued a CRL requesting additional CMC data in April 2024.
Source: www.hcplive.comCategories: General Medicine News, General HCPsTweet-
Abeona Therapeutics has resubmitted a BLA for pz-cel, for treating RDEB addressing FDA's CMC concerns from a previous complete response letter. https://t.co/ME4SgiCWnp #RareDisease
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Mashup Score: 5
The National Organization for Rare Disorders (NORD) and the Rare Disease Diversity Coalition (RDDC) have unveiled the findings of a groundbreaking national
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
NEW: Today, NORD and @rarediseasediv1 released the findings of our first-of-its-kind survey of underrepresented #RareDisease patients and caregivers, revealing unique barriers to care that MUST be addressed: https://t.co/Guzel6Qgs5 https://t.co/XvhBpLn2VE
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Mashup Score: 0Rare Diseases - 3 month(s) ago
The Year of the Zebra initiative was launched to spotlight rare diseases and help educate clinicians, patients and caregivers
Source: elsevier.healthCategories: General Medicine News, General HCPsTweet-
Continuing our work with Elsevier and @OsmosisMed's Year of the Zebra, learn about the latest featured rare disease, Von Hippel-Lindau Disease. https://t.co/1tljto3kNj #RareDisease
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Mashup Score: 8Working at Alexion - 3 month(s) ago
Browse available job openings at Alexion
Source: careers.alexion.comCategories: General Medicine News, PayerTweet-
We work tirelessly to deliver innovative medicines to a community with high unmet medical need: the #RareDisease community. Interested in supporting our mission? Check out https://t.co/qW2obms0cQ for open roles. https://t.co/z93Iet61Ec
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Mashup Score: 0Rare Diseases - 3 month(s) ago
The Year of the Zebra initiative was launched to spotlight rare diseases and help educate clinicians, patients and caregivers
Source: elsevier.healthCategories: General Medicine News, General HCPsTweet-
Continuing our work with Elsevier and @OsmosisMed's Year of the Zebra, learn about the latest featured rare disease, Von Hippel-Lindau Disease. https://t.co/1tljto3kNj #RareDisease
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Mashup Score: 6
WASHINGTON, D.C., September 18, 2024 — Today, members of the House Energy & Commerce Committee unanimously voted to advance out of Committee the Give Kids
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
Exciting day as several NORD priority #RareDisease bills advance out of @HouseCommerce’s markup. Next, the House floor. Learn more about today’s markup and take action to make your voice heard on pending legislation here: https://t.co/btDpcYZ2TK
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RT @MoezDawood: 🚨 Excited to announce the Marker paper for the GREGoR Consortium! https://t.co/kP2zju1iRc Accelerating #RareDisease diagno…