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NORD's Rare Action Network has published its second report card rating states on the strength of their policies helping people with rare diseases. Issues included are coverage of medical foods, newborn screening, prescription drug cost-sharing limits, and more. Follow this link to download the report: http://rareaction.org/resources-for-advocates/state-report-card/





20th Annual White Horse Beach Charity Golf Tournament

On July 29, 2017 Charlie O’Rouke and his committee held the 20th Annual White Horse Beach Charity Golf Tournament.

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Advocacy

As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy.

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I want to help out, but I don’t know how

Have you ever wanted to help out the MSUD Family Support Group but were unsure about how to contribute? The MSUD Family Support Group is actively looking for volunteers to assist with advocacy and fundraising efforts.

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Fundraising

In the 2016 survey of the membership of the MSUD Family Support Group, research for improved treatments and potential cure was rated “most important” by 90% of the responding members.

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Galen Carrington Classic MSUD age 27

Galen Carrington is a 27 year old Indiana resident who has classic MSUD. He underwent liver transplantation 5 years ago at Children’s Hospital

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MSUD Advocacy Update

Healthcare and issues facing the rare disease community have been at the forefront of national conversations over the past 6 months.

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A Child's Life

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