Latest Issue – April 2025

In this issue:

 

  • Annual Family Conference
    April 24-27, Dallas, TX.
  • Empathy in Delivering a Diagnosis
  • Gordon Research Conference on Lysosomal Diseases
  • Advocating for Rare Research
  • Child Neurology Foundations Neurology Toolkit
  • Mission Moment

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Community Connections

47th Annual Family Conference

For 47 years, NTSAD’s Annual Family Conference has provided individuals and families living with Tay-Sachs, Canavan, GM1 gangliosidosis, or Sandhoff disease:

A safe space to support and learn from one another,

An opportunity to learn from researchers, clinicians, and industry members,

A camp experience for children living with one of the diseases we represent,

An opportunity for rare siblings to connect with other kids just like them.

What we look forward to in Dallas:

New Attendee Orientation Session

Camp Snuggle and Camp Active for children living with Canavan, GM1, Sandhoff, or Tay-Sachs

Camp Sunshine and Youth Group for the siblings

A robust Research Day including an industry panel discussion and breakout sessions for each disease to learn more about studies, research, and trials

Empowering Families through Advocacy Session

A Texas BBQ and country music concert

Health and Symptom Management Session for families caring for younger children

Sessions for adults living with Late Onset Tay-Sachs and Sandhoff diseases

Support sessions and simply time to connect in NTSAD’s Family Lounge

Previous Issues

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Community Connections

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