Press Releases Archives - Page 2 of 35 - NORD (National Organization for Rare Disorders)

May 9, 2022

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

Tags: Rare Disease Advisory Council, RDAC, Maine, ME, Representative Margaret Craven, Legislative Document 972, LD 972

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

Tags: NORD, advocacy, Georgia, Advocate, Rare Disease Advisory Council, Beth Nguyen, RDAC, Project RDAC, Governor Kemp, Brian Kemp, Heidi Ross

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

Tags: FDA, research, treatment, grant, Levy-Yeboa Syndrome, Autoimmune Polyglandular Syndrome Type 1, APS-1, LYS, Megacystis Microcolon Intestinal Hypoperistalsis Syndrome, MMIHS, Jayne Holtzer Rare Disease Research Grants Program, therapy

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

Tags: Congress, Orphan Drug Act, Capitol Hill, Senate, Washington DC, Senator Orrin Hatch, Rare Disease Congressional Caucus, Orrin Hatch, US Congress, Utah

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