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May 9, 2022

TOPIC: Press Releases, RDACs

Maine Elevates Rare Disease Voices, Establishes State Advisory Council

Posted at May 5, 2022 04:09 pm by Rohan Narayanan

Maine becomes the 23rd state to create a council that will help address the needs of rare disease patients and their families  

May 9, 2022, Augusta, ME – Today, Maine’s rare disease community celebrated the passage of Legislative Document 972 (LD 972), which officially establishes a Rare Disease Advisory Council (RDAC) in Maine…. Read More

May 6, 2022

TOPIC: Press Releases, Advocacy, RDACs

Georgia Becomes 22nd State to Establish a Rare Disease Advisory Council

Posted at May 5, 2022 11:57 am by Rohan Narayanan

New council will help educate medical professionals, government agencies, legislators, and the public about rare diseases, research and treatment

May 6, 2022, Atlanta, GA – This week, Governor Brian Kemp signed legislation into law to establish a Rare Disease Advisory Council (RDAC) in Georgia. This advisory body will be comprised of a variety of stakeholders including patients, caregivers, health care… Read More

April 29, 2022

TOPIC: Press Releases, Research

NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research

Posted at April 4, 2022 01:01 pm by Rohan Narayanan

Three RFPs Now Open for Qualified Researchers through NORD’s Jayne Holtzer Rare Disease Research Grants Program 

April 29, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced three new requests for proposal (RFP) for grant funding related to the following rare diseases: Autoimmune Polyglandular Syndrome Type 1 (APS-1), Levy-Yeboa… Read More

April 25, 2022

TOPIC: Press Releases, Advocacy

NORD Pays Tribute to Life and Service of Senator Orrin Hatch

Posted at April 4, 2022 04:14 pm by Rohan Narayanan

April 25, 2022, Washington DC—-The National Organization for Rare Disorders (NORD) today issued a statement of tribute to the life and service of the late Senator Orrin Hatch (R-UT), who passed away over the weekend.   

“Over his many years in Congress, Senator Hatch demonstrated his commitment to public health and his concern for the millions of… Read More

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