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Rare Disease Day at NIH 2021

posted 24 hours

Mashup Score: 8

National Center for Advancing Translational Sciences - Rare Disease Day® takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the...

Senate Passes Brown, Barrasso Resolution Honoring Rare Disease Day | U.S. Senator Sherrod Brown of Ohio

posted 22 hours

Mashup Score: 6

www.brown.senate.gov - WASHINGTON, D.C. – The Senate passed U.S. Sens. Sherrod Brown (D-OH) and John Barrasso’s...

Bob Saget | NORD

posted 2 days

Mashup Score: 5

YouTube - Actor, comedian and director Bob Saget invites you to #ShowYourStripes for #RareDiseaseDay! While recognized for his role as Danny Tanner on the hit sitcom...

Advocating for a Rare Disease Advisory Council in Your State – 1433116

posted 2 days

Mashup Score: 1

event.webcasts.com - Thu, Mar 4, 2021 2:00 PM ESTDo you want to help advocate for a Rare Disease Advisory Council (RDAC) in your state? An RDAC...

  • New #webinar: "Advocating for a Rare Disease Advisory Council (RDAC) in Your State” on March 4 at 2:00pm ET. An #RDAC provides a platform for the #raredisease community to have a stronger voice in state government. Register now: https://t.co/wkLwYaUckL https://t.co/wkLwYaUckL

2021 March Southern California Support Group

posted 2 days

Mashup Score: 1

Classy - 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...

  • If you live in the SoCal area and are living with #pemphigus or #pemphigoid, @healourskin invites you to register for the next IPPF virtual support group meeting on March 6! Dr. C Freeman will be discussing stress and autoimmunity. Register here: https://t.co/JlNgqyPcMl

FDA Approves Fosdenopterin for Molybdenum Cofactor Deficiency Type A

posted 17 hours

Mashup Score: 1

HCPLive - The indication was granted on the basis of data showing an 84% survival rate among a young pediatric population that face fatal disease...

Rare Disease Day – NORD (National Organization for Rare Disorders)

posted 58 mins

NORD (National Organization for Rare Disorders) - The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are...

  • Test your knowledge ahead of #RareDiseaseDay tomorrow by answering a few trivia questions! There's still time to get involved, learn how: https://t.co/LEWoN4E00j QUESTION: More than ____ million Americans live with a #raredisease.

Blood Podcast

posted 2 days

American Society of Hematology Publications - Blood Podcast Blood Podcast   The editors of Blood are pleased to introduce a new podcast series, published weekly in conjunction with each issue...

Mercer Island moms host ‘Rare Disease Day’ to support families with similar struggles

posted 1 day

king5.com - Mercer Island residents and businesses rally behind “Show Your Stripes,” a campaign to raise awareness and support for families of children with rare...

Support Rare Disease Patients and Families by Participating in Rare Disease Day – Future of Personal Health

posted 1 day

Future of Personal Health - On the last day of February each year, the National Organization for Rare Disorders (NORD®) joins with patients, caregivers, and advocates around the globe...