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September 21, 2022

TOPIC: Research, Press Releases

NORD Opens Applications for Two New Rare Disease Research Grants

Posted at September 9, 2022 08:06 am by Rohan Narayanan

Since 1989, NORD has awarded over 200 grants totaling over $9 million in approved funding 

September 21, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced new requests for proposal (RFP) for grant funding through NORD’s Jayne Holtzer Rare Disease Research Grants Program. NORD provides grants for the study of diseases for… Read More

August 30, 2022

TOPIC: Head of the Herd, Voices of Rare Cancer, Rare Cancer Coalition, Members, Research

Head of the Herd: Annie Achee, National Leiomyosarcoma Foundation (NLMSF)

Posted at August 8, 2022 08:29 am by Rohan Narayanan

Annie Achee is the President and Community Education/Research Liaison of the National Leiomyosarcoma Foundation (NLMSF). Leiomyosarcoma is a rare sarcoma (cancer) that originates in smooth tissue (including fat, muscle, nerves, tendons, and blood and lymph vessels) and can occur anywhere in the body. For more information, see the NORD Rare Disease… Read More

August 3, 2022

TOPIC: Press Releases, Registries

All Things Kabuki and NORD® Launch Natural History Study of Kabuki Syndrome

Posted at August 8, 2022 08:30 am by Rohan Narayanan

Wasilla, Alaska, August 3, 2022All Things Kabuki and the National Organization for Rare Disorders, Inc. have launched a study with global reach to research Kabuki syndrome, which causes a variety of complications which may include mild to moderate intellectual impairment, growth delay, skeletal abnormalities, heart defects, hearing impairment, hypotonia, feeding and immune deficiencies. Kabuki syndrome currently has no… 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 19, 2022

TOPIC: Press Releases, Members, Registries

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