• March Newsletter 2025
  • Family Conference 2023
  • 9th Symposium 1
  • First Legacy Guardian Peggy Davis


OUR MISSION

In our drive to find a cure for Neurodegeneration with Brain Iron Accumulation (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

 

Contributing in honor of or in memory of someone special is a meaningful way to celebrate the spirit of a loved one or to celebrate holidays, special events or special achievements. All gifts will benefit the NBIA Disorders Association's work to improve the lives of individuals and families affected by NBIA while supporting research to find a cure.

The association will send an acknowledgement to the person or family you indicate, informing them of your gift, unless you request anonymity. We will not disclose the amount of the gift unless you ask us to. You also will receive an acknowledgement of your gift.

Much of the success of our work depends on volunteers. We always need folks to help with fundraising events, family conference planning, specialties such as graphic design, or other areas of expertise you may have.

We are open to new ideas and would like your help to introduce the NBIA Disorders Association to more people in your community. If you'd like to help in any way, please fill out our Volunteer form and let us know how we can work together.

 

FirstGiving...

The NBIA Disorders Association is a small, collaborative organization, and our impact multiplies with each new team member who shares his or her story and hosts a fundraiser.

Our staff is dedicated to providing support and resources to individuals and loved ones affected by NBIA.

Fundraising is crucial to the work we do. We are entirely funded by our families, friends, and sponsors, including private and corporate foundations. Our small team ensures that every donation, no matter the size, goes the longest way possible. Otherwise, we could not fulfill our mission to provide support to families, educate the public and accelerate research with collaborators from around the world.

You can support us by raising funds for the NBIA Disorders Association. There are many fun and creative ways for you to raise money. Possibilities include:

  • Sharing your story and asking people to give a donation
  • Asking for donations instead of birthday gifts
  • Participating in one of the larger events in which NBIA Disorders Association is involved
  • Organizing a run or walk
  • Hosting a casual dinner party for friends, neighbors and colleagues
  • Holding a golf tournament
  • Organizing a bake sale, dessert party or pancake breakfast
  • Hosting a house party where a portion of the sales of a product are donated
  • Hosting an awareness event at a local fair/school/church/synagogue
  • Hosting a tournament at your local school, roller-skating rink or bowling alley
  • Organizing a dinner/dance with a silent auction

We have several campaign pages you can tell people about via email or your social media activities. People can give online, or mail a check. Or you can create your own fundraising page using our Salsa Engage site.

Salsa Engage is a secure, online service and a terrific way to promote your cause and raise support for it at the same time. With Salsa Engage's resources and tools, you can easily create your own personal fundraising page that allows you to:

• Set a goal and track your progress
• Add photos and captions to personalize your page
• Tell your story about why you’re raising funds
• Write a thank you note that is automatically sent to supporters after a gift is received

The donations are sent directly to NBIA Disorders Association.
Choose from one of our current Campaigns or let us assist you in making a new one.

Download our Toolkit for more ideas.

Need some help getting started? NBIA Disorders Association is here to help!

For assistance contact us at info@NBIAdisorders.org.

Partners

nbia alliance logo1NBIA Cure logoRare Disease Day PartnerTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes


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