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Mashup Score: 7
SACRAMENTO, CA, April 24, 2024—Today, California is one step closer to establishing a Rare Disease Advisory Council (RDAC) to help the 1-in-10 Californians
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 6Rare Impact Awards - NORD's Rare Impact Awards - 11 hour(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 News, Rare DiseaseTweet
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Mashup Score: 6Rare Impact Awards - NORD's Rare Impact Awards - 2 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 News, Rare DiseaseTweet
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Mashup Score: 49Genetic Testing for Rare and Undiagnosed Disorders - 2 day(s) ago
About 85% of rare disorders are genetic. Watch this video, produced by the National Organization for Rare Disorders, to understand the what, when, why, and h…
Source: www.youtube.comCategories: General Medicine News, Rare DiseaseTweet-
Today is #NationalDNADay, commemorating the completion of the Human Genome Project. Did you know 85% of #RareDiseases are genetic? That's why we need to understand our DNA. Watch this video on genetic testing for rare and undiagnosed disorders: https://t.co/99yUnlHRNO #DNADay https://t.co/l5fstv2bmc
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Mashup Score: 1Community Spotlight - Ilona Williams - 2 day(s) ago
Ilona Williams joined Lydia Dubose of SRNA to discuss her journey with neuromyelitis optica spectrum disorder (NMOSD).
Source: wearesrna.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 13Living Rare Living Stronger - Rare Disease Patient Event - 2 day(s) ago
The Living Rare, Living Stronger NORD Patient and Family Forum will be a truly patient first event. Through it all, we will maintain our objectives: networking, education, inspiration, hope and fun!
Source: livingrare.orgCategories: General Medicine News, Rare DiseaseTweet-
NORD takes California! Join us on the West Coast for our 2024 Living Rare, Living Stronger Patient & Family Forum and #RareImpactAwards. Learn how you can participate in these convenings and celebrate the #RareDisease community on June 7-8 by visiting https://t.co/9gS7bfYNI5. https://t.co/pWJn7qoiTe
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Mashup Score: 7From Runner to Running for Rare Coach: Bill’s Story in Honor of National Volunteer Month - National Organization for Rare Disorders - 4 day(s) ago
Before becoming a NORD Running for Rare coach, I was a runner for over 30 years chasing my own goals, and a coach for 10 years helping other runners chase
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 2UMDF Conference - 4 day(s) ago
Each year, UMDF’s Mitochondrial Medicine Conference brings together the best minds in mitochondrial medicine and the patients we serve. With over 700 attendees representing almost every state in the U.S. and more than 15 different countries, the Conference is recognized as the world’s preeminent event for mitochondrial disease. Mitochondrial Medicine 2024 provides an international stage for leaders in mitochondrial medicine and offers programs to inspire the next generation of researchers. You will learn
Source: umdfconference.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 5Rare Impact Awards - NORD's Rare Impact Awards - 4 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 News, Rare DiseaseTweet
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Mashup Score: 1PRISMS - SMS Conference - 4 day(s) ago
To preview an abridged version of the conference program, please see a link to the program in the “Quick Links” sidebar to the left. Save the date – Friday, July 12 Conference registration is now open – click on the “Register Now!” button below to register for the 2024 SM S Conference. To provide an educational experience by sharing the most recent advances in diagnosis, treatments and management of SMS throughout the lifespan. To facilitate family-to-family support, prioritizing time to interact,
Source: www.prisms.orgCategories: General Medicine News, Rare DiseaseTweet
#California is one step closer to establishing a #RareDisease Advisory Council! Earlier this week, the bill to establish an #RDAC, introduced by @AsmRickZbur, passed out of committee, a major milestone. Learn more and take action to move the bill forward: https://t.co/N8CXSUmZCA https://t.co/LLxfwKRd7Y