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Mashup Score: 11Many parents of kids with rare diseases fight for research — even if it’s too late for their child - 3 month(s) ago
“We’re still participating in this research even though our son passed away, and that still adds meaning to his life.”
Source: www.today.comCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 5Rare Disease Day: Moderna Gets Back to Its Roots - 3 month(s) ago
Even before its RNA vaccine for COVID-19 made Moderna famous, the company’s founders had a vision for treating rare diseases.
Source: www.genengnews.comCategories: General Medicine News, Future of MedicineTweet-
Rare Disease Day: Moderna Gets Back to Its Roots After being diverted by the SARS-CoV-2 pandemic to develop and manufacture COVID-19 vaccines, the mRNA therapeutics company has refocused on advancing #raredisease treatments through the clinic. Learn more: https://t.co/j42OaokwXG https://t.co/Cm26DDs1qW
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Mashup Score: 6IU's Undiagnosed Rare Disease Clinic helps girl with rare disease find answers after 16 years of uncertainty - 3 month(s) ago
IU School of Medicine’s Undiagnosed Rare Disease Clinic (UDRC) is helping families in Central Indiana uncover the mysteries behind their unknown genetic disorders.
Source: www.wrtv.comCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 32White House Rare Disease Forum - 3 month(s) ago
The White House
Source: www.youtube.comCategories: General Medicine News, NeurologyTweet
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Mashup Score: 4Turning to Patients to Help Drive Rare Disease Drug Development - 3 month(s) ago
Patient advocacy groups aided in the development of the very first marketed drugs for certain rare diseases, including progeria and Friedreich’s ataxia.
Source: www.biospace.comCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 6Brewing up awareness for rare diseases - 3 month(s) ago
MUSKEGO — Mac Kowalske of Muskego is an active 6-year-old boy. The little athlete is a busy youngster with balancing school and playing on a hockey team for people with
Source: www.gmtoday.comCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 16
Welcome! You are invited to join a meeting: NORD Policy & Advocacy Town Hall. After registering, you will receive a confirmation email about joining the meeting.
Source: rarediseases.zoom.usCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 14
Welcome! You are invited to join a meeting: NORD Policy & Advocacy Town Hall. After registering, you will receive a confirmation email about joining the meeting.
Source: rarediseases.zoom.usCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 0
Mitapivat treatment was linked to long-term improvements in key markers of iron homeostasis and erythropoiesis in an analysis of the phase 3 ACTIVATE trial.
Source: www.hcplive.comCategories: General Medicine News, General HCPsTweet
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Mashup Score: 8Homepage - 3 month(s) ago
When you’re here, you’re part of a globally connected community committed to eliminating the challenges of rare disease. Global Genes is committed to providing information, resources and connections to all communities affected by rare diseases. The RARE Drug Development Symposium, hosted by Global Genes and the Orphan Disease Center of the University of Pennsylvania, equips advocates with the knowledge, skills and connections they need to advance therapy development for their communities. This year’s
Source: globalgenes.orgCategories: General Medicine News, PayerTweet
“We’ve never had as many clinical trials... since the Orphan Drug Act was passed & NORD was formed as we do today.” @TODAYshow looks at challenges #RareDisease parents face when fighting for research, with insights from NORD Vice President, Pamela Gavin: https://t.co/vDGwacBH2v