Rare Impact Awards – NORD’s Rare Impact Awards
This very special event will celebrate NORD’s legacy and achievements, and honor those individuals and organizations doing remarkable work on behalf of the rare disease community.
This very special event will celebrate NORD’s legacy and achievements, and honor those individuals and organizations doing remarkable work on behalf of the rare disease community.
This very special event will celebrate NORD’s legacy and achievements, and honor those individuals and organizations doing remarkable work on behalf of the rare disease…
This year’s conference will celebrate the 25th anniversary of the founding of the KDA. As always, the conference will provide a venue for patients, families,…
Raise awareness & raise funds for spinal CSF leak education and research via the Spinal CSF Leak Foundation! #becauseyourduramaters
AMP ALS, the latest public-private partnership in the FNIH’s growing AMP portfolio, will centralize and build the largest data source for ALS research. This …
The Accelerating Medicines Partnership® (AMP®) Amyotrophic Lateral Sclerosis (AMP ALS) is accelerating therapeutic and biomarker development for familial and sporadic ALS by addressing the challenges…
May 21, 2024 — The National Organization for Rare Disorders (NORD), in partnership with the Tyler James Abizeid Foundation and the MMIHS Foundation, announces
Nature Reviews Neurology – In this Perspective, the authors propose a new classification system for amyotrophic lateral sclerosis and related neurodegenerative disorders that recognizes, in…
Plan ahead. Actively listen. And discuss how to move forward.
Nora Kenworthy has spent years studying the world of crowdfunding for health care — along with the way it ends up amplifying the inequities that…
The Elon Musk-backed startup has proposed solutions for a thread pullout problem experienced by its first participant, Noland Arbaugh.