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Our hope is that this advocacy page will assist in bringing our collective voices to the table, to make great change in our country and all over the world!  Click on the links below to find information on various bills that are in process as well as other opportunities to advocate.

Rare Disease Workgroup Appointment

Ashley Appell has been appointed to New York’s Rare Disease Workgroup. Ashley was selected to serve as a patient advocate. She will express patient concerns and goals to the workshop group. The group will then advise New York Assembly representatives regarding public...

March 2022 Advocacy Update

Rare Disease Day has been brought to the public’s attention since 2008, but even before this day came to be there have been so many initiatives that the HPS Network, and the Rare Disease Community have been advocating for, and standing behind!  One of the biggest asks...

What’s Your Story?

The EveryLife Foundation for Rare Diseases launched What's Your Story?, an online rare disease story bank for advocates like you to share your experiences on a wide-range of issues impacting the rare disease community. What's Your Story? presents a series of questions...

The STAT Act

The Speeding Therapy Access Today, or STAT Act, H.R. 1730/S. 670, is a bipartisan bill that was created with the input of the rare disease community aimed at improving the development of and access to therapies for the rare disease community. The centerpiece of the...