Mashup Score:22
National Organization for Rare DisordersFinancial Assistance For Patients With Rare Diseases | NORD - 1 week
Mashup Score:22
Twitter Feed: NORD
Mashup Score:15
National Organization for Rare DisordersRare Disease Day – Share Your Story – National Organization for Rare Disorders - 1 week
Mashup Score:15
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with...
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Are you or a loved one part of the #RareDisease community? Share your story with NORD today for the opportunity to be featured in our campaign for #RareDiseaseDay, coming up on February 28: https://t.co/YguyBKXf9I https://t.co/YguyBKXf9I - view on twitter
Mashup Score:3
National Organization for Rare DisordersKiera’s Rare Disease Journey – National Organization for Rare Disorders - 1 week
Mashup Score:3
My rare disease is called sporadic visceral neuropathy. There are only four known recorded cases worldwide and very little research on the disease....
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In today’s #CommunityStory, Kiera shares her diagnostic journey & emphasizes how important it is for medical professionals to be trained & knowledgeable on #RareDiseases. Read more of Kiera’s story on our blog: https://t.co/oJzBV9ZVUT https://t.co/oJzBV9ZVUT - view on twitter
Alone we are Rare. Together we are strong. This motto exemplifies the mindset of the rare disease community and is as true today as...
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Last night, #RareDisease advocates convened on Capitol Hill to celebrate the 40th Anniversary of the #OrphanDrugAct. Thank you to speakers @KyleABryant, @RepGusBilirakis, @DorisMatsui & @RepWaxman for honoring this landmark law with us. Read more: https://t.co/fvmM5P1OQ6 https://t.co/fvmM5P1OQ6 - view on twitter
The Global Paroxysmal Nocturnal Hemoglobinuria (PNH) Patient Registry registry powered by NORD...
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Make a mark on the future of PNH research by enrolling in the Global PNH Patient Registry! Participation can be done at your own pace and is open to anyone with a paroxysmal nocturnal hemoglobinuria (PNH) diagnosis. https://t.co/EgBjcFvgTA - view on twitter
Patient Assistance Programs that can help patients afforddrugs, offer medical assistance, and help pay medical...
NORD's Classical Homocystinuria Medical Assistance Program offers eligible individuals diagnosed with HCU support to pay for low protein foods necessary in managing this diagnosis. For more information, email hcu@rarediseases.org. See more NORD PAPs: https://t.co/78S6AcaYky https://t.co/78S6AcaYky - view on twitter