Advocate
Together, We Amplify Voices
and Accelerate Change
Raise Awareness for Tay-Sachs, Canavan, GM1, and Sandhoff Disease
Join our community to help raise awareness for Tay-Sachs, Canavan, GM1, and Sandhoff disease through advocacy, volunteering, fundraising, and education. By working together, we can support affected families, strengthen our community, and accelerate research toward better treatments and ultimately, cures. Whether you share your story, host an event, or educate others, your involvement makes a meaningful difference. Additionally, every action helps expand awareness of these rare genetic diseases and brings hope to the individuals and families we serve.
Raise Awareness
Host an educational event at your school, company, place of worship, or clinic, or community organization. NTSAD provides materials, resources, and support to help you successfully raise awareness in your local community. Furthermore, educational outreach helps increase understanding, encourages early diagnosis, and fosters support for affected indivduals and families.
Share your story with legislators, policymakers, healthcare professionals, or members of the media to amplify your voice. By speaking out, you can help influence public policy, improve access to resources, and promote investment in rare disease research.
Download and share these educational resources to help raise awareness. Whether online or in person, these materials make it easier to engage others in meaningful conversations about these rare diseases and the urgent need for research and support.
Share NTSAD’s “Be Rare Aware” Disease Infographics
Advocacy Partners
NTSAD is proud to collaborate with patient advocacy organizations and rare disease partners dedicated to raising awareness, advancing research, and promoting drug development that leads to approved therapies. Together, we can achieve more than any organization could alone. Furthermore, these partnerships strengthen the collective voice of the rare disease community and help accelerate progress toward meaningful treatments.
Join us today to raise awareness for Tay-Sachs, Canavan, GM1, and Sandhoff disease, support families, advocate for research, and help build a brighter future for the rare disease community we serve.
Become a Fundraiser
Interested in fundraising for NTSAD but not sure where to get started? Contact our Development & Communications Manager, Erin Demers to learn more!
Legislative Advocacy
Lend your voice on legislative and public policy efforts at all levels: local, state, and federal.
For Media
Reach out to media outlets in your area to share your story and raise awareness. We can help you.
