Published December 6, 2019 by NORD
Tell us a little bit about yourself! Where are you from? My name is Viridiana Murillo, and I am from Pomona, California. I am a first-generation Mexican-American scientist and the …
Continue reading “Students for Rare Featured Student: Viridiana Murillo”
Read morePublished December 4, 2019 by NORD
BioNews Service reporter Larry Luxner attended the 2019 NORD Rare Diseases and Orphan Products Breakthrough Summit in Washington, DC in October, and has since written two articles based on Summit …
Continue reading “#NORDinthenews: NORD Summit content featured in two new articles”
Read morePublished October 4, 2019 by NORD
NORD is glad to have been able to assist you in accessing care and treatment for your rare disorder…
Read morePublished September 11, 2019 by NORD
NORD has released a statement on today’s House Committee on Oversight and Reform’s Subcommittee on Civil Rights and Civil Liberties hearing on the Administration’s recent revocation of medical deferred action …
Read morePublished September 6, 2019 by NORD
Singing has always been a big part of Mackenzie’s life. She auditioned for her school’s choir in seventh grade and continued singing throughout high school. But for a time, as …
Continue reading “Voices of Rare Cancer: Mackenzie’s Story”
Read morePublished August 19, 2019 by NORD
Neena Nizar, founder and president of the nonprofit Jansen’s Foundation, a NORD Member, was interviewed at the Living Rare, Living Stronger NORD Patient and Family Forum by BioNews Service in …
Continue reading “Read the Inspiring Personal Story of a NORD Member Organization Leader”
Read morePublished May 20, 2019 by NORD
Grant program established with gift from Retrophin Washington, DC and San Diego, May 20, 2019–The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million …
Continue reading “NORD Launches New Program Aimed at Providing Caregivers with Relief”
Read morePublished November 29, 2018 by NORD
Washington, DC, November 29, 2018–As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on …
Continue reading “NORD Publishes Report on Post-Transplant Lymphoproliferative Disease”
Read morePublished July 9, 2018 by NORD
The Joshua Frase Foundation (JFF) is a non-profit organization founded with a simple yet seemingly unattainable vision: to find a cure for Myotubular Myopathy (MTM). The journey towards a cure …
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