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Mashup Score: 1
The Global Paroxysmal Nocturnal Hemoglobinuria (PNH) Patient Registry registry powered by NORD platform.
Source: pnh.iamrare.orgCategories: General Medicine NewsTweet
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Mashup Score: 02025 June Mid-Atlantic Support Group - 2 day(s) ago
Living with pemphigus or pemphigoid is hard enough, but when you feel alone it seems even harder. There’s something special about connecting with people who really know what you’re going through. You are not alone This is a free, virtual meeting. The Zoom link and phone numbers for calling in w…
Source: fundraise.pemphigus.orgCategories: General Medicine NewsTweet-
Living with #pemphigus or #pemphigoid is hard enough, but when you feel alone it seems even harder. You are not alone. Join the IPPF @healourskin on June 14 for the Virtual Mid-Atlantic Support Group Meeting. RSVP: https://t.co/HGNrEgVdFZ #MidAtlantic #DMV #Dermatology
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Mashup Score: 0
NORD has launched a U.S. study called Living Rare to capture the lived experiences of rare disease patients and identify changing unmet needs.
Source: sclerodermanews.comCategories: General Medicine NewsTweet-
Living Rare Study News Alert! Read in @SclerodermaNews how NORD’s #LivingRareStudy is making sure #RareDisease patients and caregivers are heard – and transforming real-world experiences into powerful data: https://t.co/9ZRxaYx5UZ #Scleroderma Join the Living Rare Study today!
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Mashup Score: 3Find Your Herd Through Running for Rare This Global Running Day - National Organization for Rare Disorders - 8 day(s) ago
In honor of Global Running Day, we invite you to learn more about Running for Rare and hope you’ll consider getting involved as a community partner or runner
Source: rarediseases.orgCategories: General Medicine NewsTweet-
🏃♀️💙 This #GlobalRunningDay, we’re celebrating the powerful bonds formed through our NORD #Running4Rare charity running program. Like Amanda and Kyra who partnered for the 2024 #BostonMarathon. Read their account of the experience: https://t.co/LFPmC1LcSp You don’t have to run
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Mashup Score: 4New CBER chief Prasad promises to 'rapidly' push even small advances for rare disease drugs - 9 day(s) ago
FDA biologics chief Prasad pledges flexibility on rare disease drug data, citing Gleevec as model, promises faster reviews & use of real-world data while maintaining postmarket tracking
Source: Endpoints NewsCategories: General Medicine NewsTweet-
RT @ZacharyBrennan: FDA's Vinay Prasad says he will 'rapidly' push forward rare disease advances - https://t.co/nganXsR8qx
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Mashup Score: 42025 Virtual NORD Rare Disease Scientific Symposium - 10 day(s) ago
Medical professionals (MD, PhD, Researchers, Geneticists, Post-docs) Regulatory Agencies (FDA, NIH, and Other Scientific Experts) Industry professionals (Medical Affairs, R & D, Clinical Development
Source: donate.rarediseases.orgCategories: General Medicine NewsTweet-
Happening now! ⚗️🔬🧬 Join #NORD’s Rare Disease Scientific Symposium virtually to learn from #FDA experts, NORD #RareDisease Centers of Excellence, and researchers advancing innovation in fields like #GeneTherapy. Tune in: https://t.co/JWIFisY4he Virtual tickets start at $50. https://t.co/AbuOUBEfyf
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Mashup Score: 6Rare Impact Awards - NORD's Rare Impact Awards - 15 day(s) ago
This very special event will celebrate NORD’s legacy and achievements, and honor those individuals and organizations doing remarkable work on behalf of the rare disease community.
Source: rareimpact.orgCategories: General Medicine NewsTweet-
We're thrilled to announce the 2024 NORD #RareImpactAwards Honorees! These stars have each made incredible advancements on behalf of the #RareDisease community, and we look forward to celebrating them this June in Los Angeles! Meet the Honorees: https://t.co/84e8JD60eq https://t.co/PcN32KT8D7
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Mashup Score: 8Bionews: The Leading Digital Health Solutions Company - 15 day(s) ago
Bionews is a digital health solutions company and rare disease network that provides trusted information, news, and connections.
Source: bionews.comCategories: General Medicine NewsTweet-
May is #MentalHealthAwarenessMonth 💚 Revisit "Keepin’ It Rare: Let’s Talk Therapy with Dr. Al Freedman," a 5-part video series from @bionewsservices and NORD exploring the #MentalHealth impact of living with a #RareDisease. Watch here: https://t.co/QRhyXhNIYS https://t.co/ZjLQtDEEsk
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Mashup Score: 2Focus of NORD study: Rare disease community's lived experiences - 16 day(s) ago
NORD has launched a U.S. study called Living Rare to capture the lived experiences of rare disease patients and identify changing unmet needs.
Source: musculardystrophynews.comCategories: General Medicine NewsTweet-
Living Rare Study News Alert! Read in @mdnewstoday_ how NORD’s #LivingRareStudy is making sure #RareDisease patients and caregivers are heard and transforming their real-world experiences into powerful data: https://t.co/hFNMQQBARn Join the Living Rare Study today!
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Mashup Score: 0Copper Conscious Eating - Wilson Disease Association - 18 day(s) ago
Copper Conscious Eating Copper conscious eating is all about balance. It is important to still eat healthy, nutrient-dense foods while moderating copper intake. If copper is restricted too much, you could be missing out on other important nutrients. Also, if copper is excessively restricted, the body could start to increase the amount of
Source: wilsondisease.orgCategories: General Medicine NewsTweet-
Too many #WilsonDisease diet books are spreading dangerous misinformation. That’s why @wilsondisease is launching the Copper Conscious Kitchen — a trusted cookbook created with expert dietitians and patient reps. Learn more and submit your own recipe: https://t.co/VvnNnWEaoL
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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