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 info@ntsad.org for assistance with media contacts or raising awareness.

Other Ways to Get Involved

Donate!

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

Events

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

Advocate

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

Volunteer

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 without compensation, so we can spend less on administrative costs and more on raising awareness, supporting affected individuals and families, and advancing research.

Ways You Can Help!

Are you interested in learning more about how NTSAD’s committees serve rare families? Contact Kathy Flynn (kflynn@ntsad.org).

  • Communications Committee
    Help develop, improve, and refine outreach materials and external communication efforts to support families and promote the mission and work of NTSAD.
  • 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.
  • Advocacy Committee
    Tell your story! Join your voice to ours to advocate for our rare disease community and legislative priorities at the local, regional, state, and federal levels.
  • Research Initiative Committee
    Work with a stellar group of individuals to advance NTSAD’s research priorities.

Come join our growing team of passionate volunteers!

Volunteer your time and expertise. Interested in learning more? E-mail info@ntsad.org.