Legislative Advocacy

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Advocacy is important to the mission of the Phelan-McDermid Syndrome Foundation.

PMSF is committed to increasing funding for PMS and further PMS research by supporting rare disease legislation that will improve the lives of all affected by Phelan-McDermid Syndrome. Our advocates are not only patients and family members, but friends, caregivers, researchers and doctors who want to make their voices heard and improve the lives of those with Phelan-McDermid Syndrome.

As an advocate you can help:

  • Call for increased federal funding for Phelan-McDermid Syndrome research programs
  • Encourage our families and friends to become actively involved in advocating
  • Share your personal story about the impact of Phelan-McDermid Syndrome on the patient, the family and the community
  • Inform and inspire your Legislators and other elected representatives.
  • For more Legislative Advocacy resources, click here to visit our resource page

+  Keep track of legislation and votes in the US Congress

+  Key facts on Affordable Care Act

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“Be an advocate for the children, adults and families living with Phelan-McDermid Syndrome !”

Ashley Shattles,
PMSF Legislative Advocacy Chairperson

PMSF Advocacy Toolkit

PMSF Advocacy Toolkits help individuals tell their story and advocate for funding and services for individuals with Phelan-McDermid Syndrome.

To assist you in your advocacy, we are pleased to present a toolkit which provides guidelines for working with elected officials and for engaging the media. Included are fact sheets, talking points, sample letters and sample media materials to give you everything you need to begin your advocacy campaign. These materials have been developed for you to download and to help you convey important, easy to understand information about the disease and the need for additional research.

Thank you for your support!

PMSF Advocacy Toolkit

Rare Disease Day Toolkit

What can  you do now?

Share your thoughts.  If you have attended an advocacy event, please let us know what your experience was.

+ click here to share your impression of an advocacy event that you attended

Make your voice heard

Together, we can make a difference for all people who are affected by Phelan-McDermid Syndrome!  Click below to volunteer, learn and participate.

Volunteer

Volunteer

Volunteer to join the Legislative Advocacy Committee or to help with individual projects.  We need your help!

Inform

Get Informed

View the latest legislative advocacy news and updates including calls to action on our PMSF Advocacy Blog.

Facebook

Discuss

Join the discussion and debate on the PMSF LAC Facebook page.  This is a members only closed group.

PMSF | Phelan-McDermid Syndrome Foundation