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August 26, 2022

TOPIC: #NORDintheNews

What Rare Disease Patient Advocacy Groups Are Doing to Mitigate the Effects of Disparities

Posted at August 8, 2022 08:30 am by Rohan Narayanan

Rare disease patients experience inequities in diagnosis, care, and research due to a paucity of research, lack of treatments, complex needs for clinical care, and small and dispersed patient populations, among other reasons. Marginalized communities – like low-income, rural, communities of color, LGBTQ, and religious communities – experience additional barriers in accessing clinical care and are underrepresented in research… 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 at February 2, 2021 01:16 pm 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, Members, Advocacy, Rare Disease Day, #NORDintheNews

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

Posted at February 2, 2021 12:14 pm 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.


February 22, 2021

TOPIC: #NORDintheNews, Featured News, Members, Patient Stories, Rare Disease Day

Rare Disease Patient Advocate Tristan Lee Shares His Story with WebMD for Rare Disease Day

Posted at February 2, 2021 03:35 pm by Valaree DonFrancesco

Tristan Lee, a 37-year-old Pennsylvania man who has lived with sickle cell disease since birth, is a patient advocate with Sickle Cell Disease Association of America, a NORD member organization. Today, Tristan shares his personal story for Rare Disease Day with WebMD, with information about NORD noted at the end of the article. Read the piece here.


February 10, 2021

TOPIC: Featured News, Rare Disease Day, #NORDintheNews

NORD Featured in BioNews Service Article on Rare Disease Day Happenings

Posted at February 2, 2021 10:34 am by Valaree DonFrancesco

In “Pandemic Won’t Stop Rare Disease Day on Feb. 28,” an article by BioNews Service’s Mary Chapman that ran on 2.10 and is being picked up by 25+ of BioNews’ rare disease community-specific newsletters, NORD and our Rare Disease Day offerings are featured prominently, including:

  • Quotes from Peter L. Saltonstall
  • Information on the Show Your Stripes campaign and the… Read More