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February 28, 2021

TOPIC: Featured News, Patients & Members, Rare Disease Day

Actor/Comedian Bob Saget Shares Show Your Stripes Message for Rare Disease Day

Posted by Valaree DonFrancesco

Actor, comedian and director Bob Saget invites you to Show Your Stripes today! While largely recognized for his role as Danny Tanner on the hit sitcom “Full House,” his personal connection to the rare community is less well knownBob lost his sister to scleroderma and has participated in… Read More

February 26, 2021

TOPIC: Featured News, Industry, Rare Disease Day, #NORDintheNews

NORD’s Pamela Gavin Interviewed on Health Equity by PharmaBoardroom for Rare Disease Day

Posted by Valaree DonFrancesco

PharmaBoardroom, an international pharmaceutical industry media outlet providing industry trends, news and reports geared to senior professionals, recently interviewed Pamela Gavin on the importance of health equity and what NORD is doing towards achieving equity for the rare community in the United States.

The interview can be read in its entirety here.

 

 

February 25, 2021

TOPIC: Featured News, Patients & Members, Advocacy, Rare Disease Day, #NORDintheNews

NORD’s Debbie Drell Interviewed on “Connecting ALS” Podcast for Rare Disease Day

Posted by Valaree DonFrancesco

The ALS Association’s podcast, Connecting ALS, interviewed NORD Director of Membership Debbie Drell for a special Rare Disease Day episode, streaming now. The conversation touched on the origins of Rare Disease Day, storytelling, NORD’s “Show Your Stripes” campaign, and how the organization’s patient advocacy work has continued during the pandemic.

https://www.connectingals.org/episodes/showing-our-stripes-for-rare-disease-day

#NORDintheNews

February 24, 2021

TOPIC: Featured News, Patients & Members, Advocacy, Patient Stories, Rare Disease Day

National Attention for Rare Disease Day Airs on Lifetime Television

Posted by Valaree DonFrancesco

This morning, a special Rare Disease Day segment of Behind the Mystery, the recurring rare disease series on Lifetime Television’s award-winning morning show The Balancing Act, aired at 7:30am ET. The impactful segment featured NORD’s Director of Strategic Planning, Lisa Sarfaty, sharing facts about rare disease and information on how to get involved with Rare Disease Day.

February 23, 2021

TOPIC: Press Releases, Featured News, Patients & Members, Advocacy, Industry

NORD Announces This Year’s Heroes of Rare Disease: The 2021 Rare Impact Award Honorees

Posted by Valaree DonFrancesco

Washington, DC, February 23, 2021 — Today the National Organization for Rare Disorders (NORD®) announced this year’s Rare Impact Award honorees. These outstanding individuals, organizations and industry innovators will be honored for their exceptional work benefiting the rare disease community in a virtual event streaming on June 28, 2021 at 7:00pm ET. The Rare Impact Awards program is part… Read More