Published April 25, 2018 by NORD
A passion for patient advocacy, which has become her life’s work, stems from great personal loss for Ellen Sigal, Ph.D. After exhausting all of her options including an experimental therapy, …
Continue reading “Ellen V. Sigal, Ph.D.: 2018 Rare Impact Award Honoree”
Read morePublished April 25, 2018 by NORD
“Every time I meet someone new, I am focused on going into the interaction with an open mind and accepting heart,” says Chris Ulmer, co-founder and front man behind …
Continue reading “Chris Ulmer: 2018 Rare Impact Award Honoree”
Read morePublished April 17, 2018 by NORD
In this guest blog post submitted by Mackenzie Boedicker and her mother, Deb, we share the story of one woman’s mission to alleviate the struggles for those who live with …
Continue reading “Mackenzie’s Mission”
Read morePublished October 26, 2017 by NORD
View the full documentary. Danbury, C.T., October 26, 2017 – Imagine never being allowed to feel the sun on your skin. For 11-year-old Peyton, who is allergic to sunlight, that is …
Continue reading “NORD Releases New Documentary called “Good Morning Peyton””
Read morePublished March 15, 2017 by NORD
2017 Honoree Rare Impact Awards Beth Nguyen, R.N. Mother, wife, nurse, patient, advocate, and leader; Beth Nguyen wears multiple hats, and not one loosely. In 2007, before she began to …
Continue reading “Beth Nguyen, R.N. – 2017 Rare Impact Award Honoree”
Read morePublished March 15, 2017 by NORD
2017 Honoree Rare Impact Awards Matthew Might, Ph.D. Ten years ago, Dr. Matthew Might was working in computer science and knew very little about the world of rare diseases. Today, …
Continue reading “Matthew Might, Ph.D. – 2017 Rare Impact Award Honoree”
Read morePublished March 15, 2017 by NORD
2017 Honoree Rare Impact Award Ellie McGinn At only 9 years old, Ellie McGinn is driving research for a rare and fatal disease, has educated nearly 1,000 future doctors, …
Continue reading “Ellie McGinn – 2017 Rare Impact Award Honoree”
Read morePublished March 15, 2017 by NORD
2017 Honoree Rare Impact Award Frederick Kaplan, M.D. Dr. Frederick Kaplan’s life changed the day he met a 2-year-old girl with fibrodysplasia ossificans progressiva (FOP), a debilitating and progressive rare …
Continue reading “Dr. Frederick Kaplan, M.D. – 2017 Rare Impact Award Honoree”
Read morePublished March 15, 2017 by NORD
2017 Honoree Rare Impact Award Brandon Hudgins For 20 years, Brandon Hudgins has chased his dreams of being an elite athlete and has put the demanding sport of competitive running …
Continue reading “Brandon Hudgins – 2017 Rare Impact Award Honoree”
Read morePublished March 15, 2017 by NORD
2017 Honoree Rare Impact Award Christine Grube After being diagnosed with Giant Axonal Neuropathy (GAN), a rare genetic disorder, Christine (Chrissy) Grube volunteered to be the first patient injected with …
Continue reading “Christine Grube – 2017 Rare Impact Award Honoree (Awarded Posthumously)”
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.