Latest Issue – December 2026

Read this Issue

In this issue:

  • Two New Off-Label Drug Documents Now Available

    Juvenile Onset GM1 and GM2 Patient-led Listening Session

  • Juvenile Onset GM1 and GM2 Patient-led Listening Session

  • Annual Family Conference Sponsorship Opportunities

  • Share Your RADvocacy Story!

  • The 2026 Annual Family Conference – Registration Is Open!

  • Now Accepting Helping Hand Grant Applications

  • Reserve Your Annual Family Conference Hotel Room Now!

  • Mission Moment

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FEATURED ARTICLE

Share your RADvocacy Story!

Every voice in our community matters. We invite you to share what being a RADvocate means to you – whether it’s honoring a loved one, raising awareness, or supporting others on this journey.

Your words can inspire hope, foster understanding, and help others feel less alone. Together, we can show the strength and resilience of our rare disease community.

Need ideas? Here are a few prompts to get you started:

Being a RADvocate means…

I am a RADvocate because…

One way I support the rare disease community is…

What I want others to know about rare disease is…

Please send your story or a short quote along with a photo to development@ntsad.org by January 31st. We will be sharing them on social media throughout the month of February.

Thank you for helping us amplify the voices that make our community stronger!

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Get the latest news from NTSAD about our Community, the research that provides hope, and what is happening in the world of rare disease.