Published July 29, 2019 by NORD
The following story was submitted by Kayte and Ashley in honor of July’s Rare Spotlight, Gastroschisis. In this story, Kayte and Ashley reflect on their journey with the condition. When …
Continue reading “Kayte & Ashley’s Gastroschisis Story”
Read morePublished July 20, 2019 by NORD
The following story was submitted by Nicole in honor of July’s Rare Spotlight, Gastroschisis. In this story, Nicole reflects on her difficult journey with the condition; an outlook her doctor’s …
Continue reading “Nicole’s Gastroschisis Story”
Read morePublished July 18, 2019 by NORD
Earlier this year, NORD launched the first-of-its-kind Rare Caregiver Respite Program, designed to enable caregivers to take a much-deserved respite. Leah Schust, caregiver for her young son and one of …
Continue reading “Rare Caregiver Respite: Leah’s Story”
Read morePublished July 11, 2019 by NORD
In May, NORD launched the first-of-its-kind Rare Caregiver Respite Program, designed to enable caregivers to take a much-deserved respite. Debra Barnum, one of the first caregivers to participate in the …
Continue reading “Rare Caregiver Respite: Debra’s Story”
Read morePublished June 19, 2019 by NORD
New video library launched with funding from Incyte Washington, DC, June 19, 2019–The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living …
Continue reading “The NORD Rare Disease Video Library Offers New Educational Resources”
Read morePublished June 14, 2019 by NORD
The following story was submitted by Jenny Malec in honor of June’s Rare Spotlight, Appendix Cancer and Pseudomyxoma Peritonei (ACPMP). In this story, Jenny reflects on her life-changing experience after …
Continue reading “Jenny’s ACPMP Story”
Read morePublished June 3, 2019 by NORD
This collection of real-world insights is informed by scientifically validated, patient-reported data collected by NORD’s registry community.
Read morePublished May 22, 2019 by NORD
The following story was submitted by Arthur Gause in honor of May’s Rare Spotlight, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). In this story, Arthur reflects on his diagnostic journey and the …
Continue reading “Arthur’s CIDP Story”
Read morePublished May 21, 2019 by NORD
This year’s Rare Impact Awards are going to be spectacular! From star power to the heroes of the rare disease community, it is going to be a night to remember. Every …
Continue reading “Exciting Rare Impact Awards Announcements”
Read morePublished May 20, 2019 by NORD
Houston native Deborah Skolaski is the loving grandmother of Cori, a seven year-old living with metachromatic leukodystrophy. MLD is a genetic disorder that affects the nerves, muscles and other organs, …
Continue reading “Deborah Skolaski: 2019 Rare Impact Award Honoree”
Read more
Your gift today fuels progress in the lab, in clinics, on Capitol Hill and for rare families who can’t wait another year for answers.
Please complete this form to access the requested resource.