Testing for Tots
We envision a Fabry disease community empowered to improve quality of life through early diagnosis.
We advocate at the state and federal levels by meeting with legislators and sharing powerful patient testimonies. We partner with local and state medical advisory committees to advance understanding and care. We support diagnostic innovation and broader patient access, and we invest in research that highlights the life-changing benefits of early Fabry diagnosis.
Events
Exciting Tots Events Coming Up Just for You!
Advocacy Initiatives
Colorado
In January of 2023, Fabry disease was presented to the Newborn Screening Committee. The decision is in subcommittee awaiting NBSAC members to approve the stakeholder’s survey to collect the data from the healthcare community to present to the DOH in 2024.
Georgia
In March of 2022, Fabry disease was presented to the GA Newborn Screening Advisory Board. A review board has been formed to discuss the possible implementation of a Fabry NBS pilot.
Massachusetts
In April of 2023, a MA legislative initiative introduced Fabry disease via Bill HD 314. It is now awaiting committee approval in the 2024 legislative session.
Nebraska
In June 2023, Fabry disease was presented to the Newborn Screening Committee and now needs a voting physician member to submit the condition for consideration to the NBSAC.
South Carolina
Bill SC S0525 introduced February 9, 2023 by Senator Turner. Next step, work with DHEC to add Fabry to 2024 budget Fall 2023.
Utah
In January 2023, Fabry disease was accepted into the subcommittee and is now awaiting further direction.
Wisconsin
The presentation is in process and will need a local physician to co-sign the nomination form.
News
Stay Informed with Tots News!
Thank you for thinking of us
Testing for Tots is a program of Fabry Support & Information Group, a nonprofit support organization and relies on charitable donations. With your ongoing generous support we are able to continue empowering the Fabry disease community to improve quality of life through early diagnosis.
Ways to Support Testing for Tots
Donate by Check
You can make a check out to Testing for Tots and mail it to:
FSIG 108 NE 2nd St PO Box 510Concordia, MO 64020
Donate through PayPal
Donate through Venmo
You can make a donation through Venmo by using Testing for Tots.
