Get Involved

Awareness, Prevention, and Fundraising for a Brighter Future

Raise Awareness

There is always an opportunity to raise awareness about these diseases, and NTSAD has the tools to help you.

Share NTSAD’s “Be Rare Aware” Disease Infographics

Educate friends and family by sharing NTSAD’s “Be Rare Aware” infographics either on social media or by handing out printed copies.

Talk to a Local Group

Many houses of worship, schools, and even local hospitals would work with you to organize an educational forum. NTSAD can connect you to resources to help you with presenting critical information to attendees.

Connect with Your Local Media

Telling your own personal story can be effective in raising awareness. Contact Susan, NTSAD’s Director of Development and Communications (, for assistance with media contacts or raising awareness.

Other Ways to Get Involved


Make a gift online, or by phone, check, or credit card. Make a gift in honor of – or in memory of – a loved one.


Join the cause by attending or organizing an event to help raise awareness and funds.


Follow how change can be made by supporting legislation that affects NTSAD and the rare genetic disease community.


NTSAD relies on volunteers to help spread the word and raise awareness.

With the exception of our small staff, everyone involved with NTSAD, including its Board of Directors and Committee members, generously give their time, energy, and talents to NTSAD for free so we can spend less on administrative costs and more on raising awareness and finding a cure.

Ways You Can Help!

Join one of NTSAD’s committees and have a voice in what the organization does next.

  • Annual Family Conference Committee
    Support the Conference VP and Member Services Director while planning the Annual Family Conference.
  • Development Committee
    Share your ideas on how NTSAD can succeed in raising funds for research, family support, and the overall health of the organization.
  • Family Services Committee
    Be there for families and individuals when they come to NTSAD for guidance and support.
  • Research Initiative Committee
    Work with a stellar group of members and get involved with the exciting progress on the research front.

Come join our growing team of passionate volunteers!

Volunteer your time and expertise. Contact the national office at (617) 277-4463.