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Mashup Score: 3
The Global Paroxysmal Nocturnal Hemoglobinuria (PNH) Patient Registry registry powered by NORD platform.
Source: pnh.iamrare.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 2Seeking Partner for New Cure HHT Website: RFP Now Open - CureHHT - 4 month(s) ago
Cure HHT is excited to announce the launch of a Request for Proposals (RFP) for a comprehensive rebuild of our website! As our organization continues to grow and expand its reach in supporting the HHT community, we recognize the critical need for a modern, user-friendly, and informative online platform. This website is the primary touchpoint…
Source: curehht.orgCategories: General Medicine News, Rare DiseaseTweet-
NORD Member @CureHHT recently launched an #RFP for a website rebuild! They're seeking a partner to create a modern, user-friendly platform for the #HereditaryHemorrhagicTelangiectasia (#HHT) community. Details: https://t.co/U6uWdSVuVH #WebsiteDesign #WebDesign #UX
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Mashup Score: 3Oregon Lobby Day - 4 month(s) ago
Take this survey powered by surveymonkey.com. Create your own surveys for free.
Source: www.surveymonkey.comCategories: General Medicine News, Rare DiseaseTweet-
Attention #Oregon rare disease advocates! Join NORD in #Salem on April 22 to talk to legislators about the importance of passing the bill to create a #RareDisease Advisory Council (#RDAC). Sharing your story can help us push for change! Register here: https://t.co/xoCiROduDN https://t.co/DpxcRt3d5t
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Mashup Score: 1Christopher & Dana Reeve Foundation | HeyPeers - 4 month(s) ago
HeyPeers – where peers and support groups connect
Source: www.heypeers.comCategories: General Medicine News, Rare DiseaseTweet-
RT @ReeveFoundation: Join us tonight at 6PM ET for a virtual support group on living with paralysis. Register here: https://t.co/GjyCUwCGk2…
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Mashup Score: 1Dedicate a Mile | Tri-State Trek - The Ride to End ALS - 4 month(s) ago
Dedicate a Mile
Source: tst.als.netCategories: General Medicine News, Rare DiseaseTweet-
A nice way to remember a loved one... https://t.co/XBA2w78CGm
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Mashup Score: 0Mitochondrial respiratory complex IV deficiency recapitulates amyotrophic lateral sclerosis - 4 month(s) ago
Nature Neuroscience – Cheng et al. identify a mitochondrial complex IV (CIV) deficiency in the brains of patients with sporadic amyotrophic lateral sclerosis (ALS). They demonstrate that defects in…
Source: www.nature.comCategories: General Medicine News, Rare DiseaseTweet-
https://t.co/ButWN0tpZi
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Mashup Score: 0
The six-month continuing resolution before Congress would cut $1.2 billion from the Pentagon’s health research into deadly diseases.
Source: rollcall.comCategories: General Medicine News, Rare DiseaseTweet-
https://t.co/4sO5GPV7BV
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Mashup Score: 0
The Alpha-1 Foundation (A1F) is proud to commemorate its 30th anniversary of supporting patients with Alpha-1 Antitrypsin Deficiency (Alpha-1) while […]Read More… from The Alpha-1 Foundation Commemorates its 30th Anniversary
Source: alpha1.orgCategories: General Medicine News, Rare DiseaseTweet-
🎉 The Alpha-1 Foundation, @AlphaFriend, is marking its 30th anniversary this year! 🥳 Their celebratory announcement has been reshared nationwide. Read it here to learn about their 30+ years supporting those with #Alpha1: https://t.co/ayWLvGThKI
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Mashup Score: 0
John Roehrig died March 8 after a battle with ALS. During his career, he was on the front lines of the U.S. response to West Nile virus.
Source: www.coloradoan.comCategories: General Medicine News, Rare DiseaseTweet-
#ALSobit John Roehrig https://t.co/cDFmLBe6M7
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Mashup Score: 2
The FDA told staff on Monday that reviewers of medical products and inspectors of manufacturing facilities cannot take the buyout offer circulated on Friday from HHS that would’ve provided as much as $25,000 in severance, three FDA officials confirmed to Endpoints News.
Source: endpts.comCategories: General Medicine News, Rare DiseaseTweet-
RT @ZacharyBrennan: FDA blocks drug and device reviewers from taking HHS' buyout offer - https://t.co/015tTGnfQ8
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Hear what other participants are saying about the Global #PNH Patient Registry! Do you want to be a part of this important research too? Learn more at https://t.co/EgBjcFvgTA https://t.co/yjHwX6O4un