LSD Coalition Created and Brian Jones is Treasurer

New Lysosomal Storage Disease Advocacy Coalition Formed to Advance Patient Advocacy

Testing for Tots founders Dr. Brian Jones and Mrs. Tia Jones are delighted to announce the formation of the Lysosomal Storage Disease Advocacy Coalition (LSDAC).

The Lysosomal Storage Disease Advocacy Coalition is a nonprofit coalition of patient advocacy organizations dedicated to advancing public policy priorities that benefit individuals and families living with lysosomal storage disorders (LSDs).

Bringing Patient Advocacy Organizations Together

With Dr. Brian Jones serving as Treasurer, the following organizations are founding partners of the coalition:

• Fabry Support and Information Group (FSIG)
• National Fabry Disease Foundation
• Gaucher Community Alliance
• The MPS Society
• National Niemann-Pick Foundation
• Testing for Tots

Together, these organizations represent communities affected by a range of lysosomal storage disorders and share a commitment to improving outcomes for patients and families.

Leadership of the Coalition



Aviva Rosenberg, Co-President of the Gaucher Community Alliance, will serve as the coalition's inaugural President.

Justin Hopkin of the National Niemann-Pick Foundation will serve as Vice President, with Dr. Brian Jones serving as Treasurer.

Advancing Key Policy Priorities

The coalition will focus on several key priorities that have the potential to improve access, treatment, research, and support for individuals living with LSDs:

• Expanding newborn screening for lysosomal storage disorders to all 50 states.
• Introducing and passing Medicare home infusion for patients with LSDs.
• Advocating for increased funding for research into lysosomal storage disorders.
• Raising awareness of LSDs among members of Congress and other key stakeholders.

Working Together for the LSD Community

The goal of the Lysosomal Storage Disease Advocacy Coalition is to work alongside policymakers, pharmaceutical companies, national medical societies, and other stakeholders to advance policies that benefit patients and improve the quality of life for current and future generations living with lysosomal storage disorders.

By bringing patient advocacy organizations together, LSDAC hopes to create a stronger, unified voice for the LSD community.

Interested in Joining the Coalition?

Organizations interested in joining the Lysosomal Storage Disease Advocacy Coalition can contact:

Aviva Rosenberg
Aviva@gauchercommunity.org