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Mashup Score: 2The Urgency of Reauthorizing Rare Disease Priority Review Vouchers - Patient Worthy - 3 month(s) ago
Don’t miss this story about the need to revive the rare disease Priority Review voucher program.
Source: patientworthy.comCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 13Why Gabby Raises NLSD-M Awareness - Patient Worthy - 5 month(s) ago
Right now, Gabby is the only known person in the United States living with NLSD-M. To her, awareness is a way to find the unseen.
Source: patientworthy.comCategories: General Medicine News, Rare DiseaseTweet-
Only one person in the U.S. is known to have NLSD-M, or neutral lipid storage disease with #myopathy. Her name is Gabby! We profiled Gabby for #RareDiseaseDay - she's one of about 100 NLSD-M patients worldwide. Read her latest feature in @PatientWorthy: https://t.co/SBR08e74lU
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Mashup Score: 2ATTR Amyloidosis: 1 in 4 Patients Experience Neurological and Cardiac Symptoms - Patient Worthy - 7 month(s) ago
Don’t miss this story about the latest ATTR amyloidosis research.
Source: patientworthy.comCategories: General Medicine News, Onc News and JournalsTweet-
RT @PatientWorthy: ATTR Amyloidosis: 1 in 4 Patients Experience Neurological and Cardiac Symptoms https://t.co/GH6FJcnVjn #Amyloidosis #ATT…
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Mashup Score: 5Zebra Hop: A Rare Disease Beer Initiative - Patient Worthy - 11 month(s) ago
A Milwaukee brewery is brewing a Zebra Hop beer to raise rare disease awareness and raise important research funds for NORD.
Source: patientworthy.comCategories: General Medicine News, Rare DiseaseTweet-
Check out this @PatientWorthy feature on Jonathan Kowalske, owner of @ComponentBeer and rare dad to a son with #MalanSyndrome, who created Zebra Hop to benefit rare disease patients! Learn how to bring it to a brewery near you ahead of #RareDiseaseDay: https://t.co/YdZkWrz7zk
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Mashup Score: 7Recapping NORD 2023 Breakthrough Summit - Patient Worthy - 11 month(s) ago
After attending the NORD Breakthrough Summit in October, I wanted to share the best rare disease insights from the event.
Source: patientworthy.comCategories: General Medicine News, Rare DiseaseTweet-
It's been two months since our NORD Breakthrough Summit in DC, but we're still reflecting on everything we learned and everyone we met! Read this wonderful recap from @PatientWorthy of the event's standout moments: https://t.co/EhZ0VWWzRt #NORDSummit
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Mashup Score: 24
An Ehlers-Danlos syndrome patient expresses concern about the impact of recent legislation on drug development.
Source: patientworthy.comCategories: General Medicine News, Rare DiseaseTweet-
"With so many #RareDisease patients still waiting for a cure, we can’t afford to lose any potential therapeutic options." In this op-ed in @PatientWorthy, an advocate with #EhlersDanlosSyndrome asks Congress to protect rare disease treatment development: https://t.co/COzyCVgNqM
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Mashup Score: 1
Some impactful drug approvals could take place by the end of 2023.
Source: patientworthy.comCategories: Latest Headlines, Rare DiseaseTweet-
RT @PatientWorthy: A Preview of Potentially Historic FDA Approvals for 2023 https://t.co/7KsdRICYb7 #FDA #DrugApproval #RareDisease
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"Time is short. Congress must act now to renew the #PRV program creating a future where no child’s potential is destroyed by a #RareDisease." - Dr. Matthew Winton Read more in @PatientWorthy: https://t.co/vI7UEIeszN