TOPIC: Patient Stories
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 new program, shared how she recently spent her break.
“I was able to meet and have dinner with… Read More
TOPIC: Events, Get Involved, Patients & Members
NORD and the Foundation for Rare Blood Diseases (SZB) invite you to register for an externally-led Patient Focused Drug Development (EL-PFDD) meeting on Pyruvate Kinase deficiency (PKD), taking place Friday, September 20. Scholarships are available to eligible applicants to assist with travel and accommodation expenses.
If… Read More
TOPIC: Featured News, Medical, Patients & Members, Research
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 Disease Video Library, a resource featuring videos on rare diseases and related topics for patients, caregivers, students, professionals and the public.
The… Read More
TOPIC: Get Involved
NORD’s Educational Initiatives team spoke with Alexander Pham, a Massachusetts College of Pharmacy and Health Sciences student and NORD Students for Rare Chapter Leader. In this interview, Alexander talks about his desire to get involved in the rare disease community.
For more information on NORD’s student programs, click here.
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TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members
The time is now…
In 2019, we believe “The Time is Now“ to prioritize action in order to develop stronger resources, build better outcomes and find cures for the millions of Americans living with… Read More
