Published August 30, 2019 by NORD
This story is my rare cancer syndrome journey. I have a rare genetic illness called PTEN hamartoma tumor syndrome, which was diagnosed in 2011 after I was diagnosed with thyroid …
Continue reading “Voices of Rare Cancer: Kristin’s Story”
Read morePublished August 21, 2019 by NORD
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 …
Continue reading “Mark Your Calendars – October 1 is Rare Cancer Day!”
Read morePublished August 20, 2019 by NORD
In a recent article published by HealthDay entitled “‘Dr. Google’ Helps Some Patients Diagnose a Rare Disease,” NORD’s Mary Dunkle notes common reasons for rare disease diagnosis delays and cautions …
Read morePublished August 14, 2019 by NORD
We’re delighted to announce that Acting FDA Commissioner, Norman E. “Ned” Sharpless will deliver the keynote address at this year’s Rare Diseases & Orphan Products Breakthrough Summit. Sharpless, a physician and scientist, became …
Continue reading “FDA Acting Commissioner to Deliver NORD Rare Summit Keynote”
Read morePublished August 7, 2019 by NORD
The collaborative project between the organizations will kick off at a launch meeting in September and will aim to reduce barriers for the development of new treatments and cures …
Continue reading “FUNDED BY FDA, C-PATH and NORD TO LAUNCH RARE DISEASE DATA ANALYTICS PLATFORM”
Read morePublished July 31, 2019 by NORD
Washington, DC, July 31, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing the over 25 million Americans with rare diseases, has announced the Patient/Caregiver Opening …
Read morePublished July 19, 2019 by NORD
Washington, DC, July 19, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing the over 25 million Americans with rare diseases, announces the appointment of four …
Continue reading “NORD Announces Four New Board Members”
Read morePublished July 9, 2019 by NORD
The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has added a new video to the NORD Rare …
Continue reading “New Video on PTLD Added to NORD Rare Disease Video Library”
Read morePublished July 2, 2019 by NORD
The time is now…register today!
Read morePublished July 1, 2019 by NORD
NORD’s Hurricane Emergency Relief Fund provides limited financial assistance to those with a rare disease who are victims of natural disasters. Emergency relief funds may be requested once per household/per …
Continue reading “Help for rare disease patients impacted by Hurricane Dorian”
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