Members Archives - NORD (National Organization for Rare Disorders)

April 19, 2022

TOPIC: Press Releases, Registries, Members

The Snow Foundation for Wolfram Syndrome Research and NORD® Launch Natural History Study of Wolfram Syndrome

Posted at April 4, 2022 09:00 am by Valaree DonFrancesco

Clayton, MO, April 19, 2022 —Today, April 19, 2022, The Snow Foundation for Wolfram Syndrome Research and the National Organization for Rare Disorders, Inc. launched the largest-ever study to research Wolfram syndrome, a disease that causes diabetes insipidus, diabetes mellitus, optic atrophy, and deafness as well as various other possible disorders. Wolfram syndrome currently has no cure.

The new study,… Read More

Tags: research, Registry, The Snow Foundation, Wolfram Syndrome

April 8, 2021

TOPIC: Medical, Patients & Members, Industry, Members

NORD Expands Gene Therapy Offerings Through New Online Resources

Posted at April 4, 2021 09:00 am by Lisa Sencen

For several years, the National Organization for Rare Disorders (NORD) has prioritized gene therapy education to advance knowledge and promote safe and effective clinical applications to reduce suffering from rare conditions. With this goal in mind, NORD is dedicated to producing a variety of educational resources for patients, caregivers, health care providers, and the public.

One of the newest resources… Read More

Tags: rare disease community, Gene therapy, NORD, Rare Diseases, continuing medical education, ASGCT