Published January 31, 2020 by NORD
At the head of the herd is… Mike Morris, Co-Founder & President, TANGO2 Research Foundation Get in touch with Mike on… Facebook and Twitter Mike advocates for those living with… …
Continue reading “Head of the Herd: Mike Morris, TANGO2 Research Foundation”
Read morePublished January 17, 2020 by NORD
At the head of the herd is… Leah Schust Myers, Founder, Executive Director and Research Committee Chair, FamilieSCN2A Foundation Leah advocates for those living with… SCN2A Disorders Leah is located …
Continue reading “Head of the Herd: Leah Schust Myers, FamilieSCN2A Foundation”
Read morePublished December 3, 2019 by NORD
By Debbie Drell, Director of Membership My sister was diagnosed with a rare disease, pulmonary hypertension, in September of 1998. At some point during her diagnosis, she was told she …
Continue reading “NORD’s Work with FDA Gives Patients a Chance to Be Heard in Drug Development”
Read morePublished November 22, 2019 by NORD
One of the first caregivers to participate in the Rare Caregiver Respite Program, Debra shared with NORD how she used her award. “I was able to meet and have dinner …
Continue reading “Rare Caregivers Corner: Debra’s Story”
Read morePublished November 15, 2019 by NORD
NORD’s Rare Caregiver Respite Program provides eligible caregivers the opportunity to take a much-deserved break while knowing their loved one is being well cared for. Caregiver Stephanie recently answered a …
Continue reading “Rare Caregivers Corner: Q&A with Stephanie”
Read morePublished November 8, 2019 by NORD
My husband and I got away for a whole week! We went to a resort where we could relax by the pool and catch up on much needed sleep. To …
Continue reading “Rare Caregivers Corner: Cathy’s Respite Story”
Read morePublished November 1, 2019 by NORD
Patient AirLift Services (PALS) recently provided air and ground transportation for a mom and son who went through years of not knowing the cause of bone pain, fatigue, brain fog …
Read morePublished October 1, 2019 by NORD
Life was busy in 2010 with work, volunteering and engaging with our sons’ sports schedules. Being tired was just part of our eventful lifestyle. Consequently, when we received my diagnosis …
Continue reading “Voices of Rare Cancer: Lisa’s Story”
Read morePublished October 1, 2019 by NORD
WHAM! The news I received from my doctor was a left hook to my temple thrown by Muhammad Ali. I was just told that I had myelodysplastic syndromes (MDS). My …
Continue reading “Voices of Rare Cancer: Brian’s Story”
Read morePublished October 1, 2019 by NORD
Hi! I’m Susan from Philadephia. My journey began in 1991 when I visited a local dermatologist for a strange rash that didn’t go away. That day changed my life. A …
Continue reading “Voices of Rare Cancer: Susan’s Story”
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.