• Family Conference 2023
  • DecNewsletter
  • First Legacy Guardian Peggy Davis


OUR MISSION

In our drive to find a cure for NBIA,
we provide support to families, educate the public and accelerate research with collaborators from around the world.


 

News

NBIAcure prepares to submit for FDA
approval of CoA-Z compound

 

Educational Resources

​Posters, flyers and
other educational handouts

 

Karri and Kevin

October, 2017

Now into a second generation of family friendships, Al Kowalski and his family showed the power of ties that bind.

The Kowalskis turned their annual family “Outlaw Open” golf outing into a fundraiser for NBIA this year to support their friends, Christie and Kevin Orzechowski. Their two children have an NBIA disorder.

Chargers for Change Group Photo

Student group awards $1,400 to advance NBIA research

A Dallas student organization committed to assisting global and community organizations recently chose the NBIA Disorders Association for a $1,400 research grant award.

Brittany at Hay Market Masonic Lodge No. 313, in Haymarket, VA

Hay Market Masonic Lodge No. 313, in Haymarket, VA., is an avid supporter of NBIA research.

Rich and Sandy Leap’s daughter, Brittany, has NBIA, and they live in Haymarket. An article in the town newspaper in 2006 caught the attention of Bro. Bruce Silvernale – then Junior Warden of the Lodge.

Dr. Ody Sibon In the Netherlands, when a researcher becomes a full professor, a special ceremony is held where he or she gives a lecture and is then feted at a big party with dinner and drinks. Often the professor will ask for charitable donations rather than a gift.

Partners

nbia alliance logo1NBIA Cure logoRare Disease Day PartnerTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes


Disclaimer    |     Privacy Policy    |     Financials    |     Contact Us

Give While You Shop!

Igive.com

G-CFB5FV5NLL