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March 3, 2020

TOPIC: Patients & Members, Events, Get Involved

NORD Announces Sing Me a Story Raffle for Upcoming Living Rare, Living Stronger Patient and Family Forum

Posted at March 3, 2020 08:00 am by Valaree DonFrancesco

NORD is proud to welcome Sing Me a Story to the upcoming 2020 Living Rare, Living Stronger Forum in Cleveland, Ohio, where the ideas of children living with rare diseases will be turned into song! This opportunity is supported by Horizon Therapeutics’ #RAREis program.

NORD will spotlight one… Read More

February 27, 2020

TOPIC: Advocacy, Get Involved, Rare Disease Day

Tik Tok Influencer Mark Anastasio Challenges Connecticut Students to Stripe Out Their Schools

Posted at February 2, 2020 08:10 am by Valaree DonFrancesco

Dance, lip-sync and comedy video creator Mark Anastasio spoke in a somewhat different tone in a recent Tik Tok video for his 6.3 million followers. The content of the video? Raising awareness for the rare disease community in memory of his teacher’s son, Tyler Cummings.

Mark also used the video to… Read More

February 26, 2020

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

NORD Debuts Rare Disease Day 2020 Video

Posted at February 2, 2020 07:20 am by Valaree DonFrancesco

This year, NORD has developed a brief video for Rare Disease Day featuring rare patients, caregivers and supporters sharing their thoughts on the importance of the day and relaying the rallying cry, “Show Your Stripes!”

Show Your Stripes takes its cue from the zebra, mascot of the rare disease community, which is known for its distinctive… Read More

December 2, 2019

TOPIC: Featured News, Get Involved

What Questions Would You Ask About Gene Editing?

Posted at December 12, 2019 08:05 am by Valaree DonFrancesco

Do you have questions about gene editing and how it may advance the treatment of people with rare diseases? Much has been written lately about the promise of CRISPR and other gene-editing tools as future treatments for many rare diseases. 

NORD is creating a new educational video on this topic, and we want to be sure… Read More

August 21, 2019

TOPIC: Press Releases, Featured News, Advocacy, Get Involved

Mark Your Calendars – October 1 is Rare Cancer Day!

Posted at August 8, 2019 09:19 am by Valaree DonFrancesco

Washington, DC, August 29, 2019–The National Organization for Rare DisordersⓇ (NORD) has announced a day devoted to raising awareness about rare cancers. Spearheaded by the NORD Rare Cancer Coalition®, which is comprised of 24 rare cancer-specific Member Organizations, Rare Cancer Day will be observed on October 1 to highlight the challenges people living with rare cancers face… Read More