LSD Coalition Created and Brian Jones is Treasurer
Testing for Tots founders, Dr Brian and Mrs Tia Jones, are delighted to announce the formation of The Lysosomal Storage Disease Advocacy Coalition (LSDAC). This non-profit coalition of multiple patient advocacy organizations is dedicated to advancing public policy priorities to benefit several communities living with lysosomal storage disorders (LSDs). With Dr Brian Jones serving as treasurer, these are the following organizations who are founding partners:
- Fabry Support and Information Group (FSIG)
- National Fabry Disease Foundation
- Gaucher Community Alliance
- The MPS Society
- National Neimann-Pick Foundation
- Testing for Tots
Aviva Rosenberg, Co-President of the Gaucher Community Alliance will serve as inaugural President and Justin Hopkin of the National Neimann-Pick Foundation will be Vice President. The coalition will focus on:
- Extending Newborn Screening for Lysosomal Storage Disorders to all 50 States.
- Introduce and Pass Medicare Home Infusion for LSD Patients.
- Advocating for increased funding for research into LSDs.
- Raising awareness of LSDs to Congress and other Stakeholders.
Our goal is to work alongside policymakers, pharmaceutical companies, national medical societies, and other stakeholders to advance policies that benefit and improve the quality of life for current and future patients with LSDs. To join the Lysosomal Storage Disease Advocacy Coalition, please contact Aviva Rosenberg at Aviva@gauchercommunity.org or James Romano at email@example.com.
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