#NORDintheNews Archives - NORD (National Organization for Rare Disorders)

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.

Tags: NORD, Medicaid, clinical trials, Rare disease advisory councils, telehealth, Project RDAC, health equity, RDACs, Pamela K. Gavin, telehealth principles

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 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.

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

#NORDintheNews

Tags: Rare Disease Day, NORD, Lou Gehrig's disease, Debbie Drell, The ALS Association, Connecting ALS, Director of Membership

February 22, 2021

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

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.

#NORDintheNews

Tags: Rare Disease Day, Patient Advocate, sickle cell disease, Sickle Cell Disease Association of America, Tristan Lee

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

Tags: Rare Disease Day, eurordis, Peter L. Saltonstall, National Institutes of Health, Rare Action Network, Rare disease advisory councils, The Balancing Act, Lifetime Television, Behind the Mystery

February 2, 2021

TOPIC: Featured News, Research, #NORDintheNews

NORD Featured in February 2021 Issue of PharmaVOICE

Posted at February 2, 2021 10:25 am by Valaree DonFrancesco

In its February 2021 issue, PharmaVOICE features NORD in its Rare Disease Showcase column. In “Rare Disease: Tackling the Barriers to Rare Disease Treatment,” NORD’s Undiagnosed Patients Registry and the COVID-19 Community Survey Report are referenced. In “The State of Rare Disease, Diagnosis, and Treatment,” the Barriers to Rare Disease Diagnosis, Care and Treatment in the US: A 30-Year… Read More

Tags: covid-19, NORD COVID-19 Community Survey Report, PharmaVOICE, Undiagnosed Patients Registry