The Phelan-McDermid syndrome (PMS) community may be small, but we are powerful when we join our collective voices and actions around the world. We are a community of champions who face the daily challenges of living with Phelan-McDermid syndrome with courage and grace.
Raising awareness and effective legislative advocacy are essential to ensuring the health, safety, and enhanced quality of life for those affected by PMS. At the Phelan-McDermid Syndrome Foundation (PMSF), we strive to provide information to parents and caregivers that will empower them to advocate for their child or loved one with Phelan-McDermid syndrome.
We are committed to informing the broader community of critical public policy issues through a connection with the leading patient advocacy groups throughout the world. We encourage our community to actively participate in legislative events thus leveraging the power of grassroots supporters to enact change on vital issues.
Raising awareness about Phelan-McDermid syndrome (PMS) is one way you can help to alert the community about it. This can lead to increased diagnoses, increased attention in research, and increased support for families.
There are many ways to increase awareness in your community, your child’s school, your local legislature and with family and friends. Sharing information about PMS and how it impacts your loved one specifically with your community will make life easier for your child. You will find that people around you want to know how to support you and your child. Telling your story will help your community understand that your child is not just a PMS diagnosis, but rather wonderful, celebrated, extraordinary members of the community.
The Phelan-McDermid Syndrome Foundation (PMSF) is committed to increasing funding for research by supporting rare disease legislation that will improve the lives of all affected by Phelan-McDermid syndrome (PMS). 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.
Advocacy can seem intimidating at first, but it is critical to advocate for public policy that impacts our community and the greater rare disease community.
Know who your representatives are. Introduce yourself so they know who you are. Tell your story and let your rep know what is important to your family. Participate in awareness activities.
Ask families and friends to become actively involved in advocacy. Share your personal story about the impact of Phelan-McDermid syndrome (PMS) on your family and the community.
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