EveryLife Foundation: Organizations Join Together in Support of Expanding Newborn Screening
April 5, 2016
Please join the EveryLife Foundation for Rare Diseases, Muscular Dystrophy Association, Global Genes and 50 other patient organizations in supporting CA SB 1095, lifesaving legislation to expand newborn screening for rare diseases.
SB 1095 is scheduled to be heard in the California Senate Health Committee on April 13th. We need YOU to help pass SB 1095 and save the lives of babies born in California. Here are 3 ways you can help:
- FOR CALIFORNIA INDIVIDUALS: SEND AN EMAIL to your state legislators asking them to support and co-author this bill.
- FOR POMPE OR MPS I PATIENTS OR CAREGIVERS: SUBMIT YOUR PATIENT STORY to be presented as testimony at the upcoming hearing.
- FOR ORGANIZATIONS: SIGN YOUR ORGANIZATION ON to the letter supporting SB 1095.
Approximately 30 percent of children with a rare disease will not live to see their fifth birthday, so early diagnosis is pivotal to bringing treatments to babies and saving lives. Authored by Senator Dr. Richard Pan, this lifesaving legislation would allow the state to begin screening for MPS I and Pompe, life threatening diseases that have had approved treatments for more than a decade, and screen for additional rare diseases once they are added to the federal Recommended Uniform Screening Panel (RUSP), a guideline that is issued by scientists and health care professionals.
This legislation can be a model for newborn screening in other states moving forward, so your support will help bring early diagnoses and treatments to children born in California and beyond!
Thanks for your support.
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