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Sep. 21, 2022

TOPIC: Press Releases, Research

NORD Opens Applications for Three New Rare Disease Research Grants

Posted 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 which there are few other sources of funding. 

Grants will be awarded to qualified researchers to initiate small scientific research studies or clinical trials, the results of which could be used to obtain funding from the National Institutes for Health (NIH), US Food and Drug Administration (FDA), or other funding agencies, or to attract a corporate sponsor. The RFPs are related to the following rare diseases:  

Autoimmune Polyglandular Syndrome Type 1 (APS-1): NORD is accepting applications for one grant of $50,000 for scientific and/or clinical research studies related to APS-1.

  • APS Type 1 is a rare genetic disorder caused by mutations of the AIRE gene. Mutations in AIRE lead to multi-organ system autoimmunity typified by three classic manifestations.
  • This grant is made possible with funding from the APS Type 1 Foundation.
  • Deadline for letters of intent is Monday, November 14More information and to apply. 

Levy-Yeboa Syndrome (LYS): NORD is accepting applications for one grant up to $40,000 for scientific and/or clinical research studies related to LYS.  

  • LYS, an STXBP3-associated disease, is a very rare disease with no established foundation. 
  • This grant was made possible through fundraising by the Maxwell Family.  
  • Deadline for letters of intent is Monday, November 14. More information and to apply. 

Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (MMIHS): NORD is accepting applications for one grant of $30,000 for scientific and/or clinical research studies related to MMIHS. 

  • MMIHS (or Berdon Syndrome) is an extremely rare disorder that affects the bladder and gastrointestinal system.  
  • This grant was made possible through funding from the MMIHS Foundation. 

The NORD Jayne Holtzer Rare Disease Research Grants Program provides seed-money grants to qualified investigators for scientific and clinical research. To learn more or submit to the 2022 NORD Research Grants Cycle, visit the NORD website. 

 

About the National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 330 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.