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Volunteer

Our success is founded on the work of volunteers––we rely on volunteer support around the country to help us carry out our mission. As a volunteer, you’ll create positive change in the PKU community, grow your skills and meet new people associated with PKU.

To help us continue to make great strides for the PKU community, volunteer on one of our committees or programs.

Here are some ways that you can volunteer with the NPKUA:

Advocacy

  • Posting messages on your Congressional Representatives’ social media pages related to advocacy.
  • Calling the Health Legislative Assistants in your federal Congressional Representatives’ offices to discuss legislation affecting the PKU community.
  • Meeting with Health Legislative Assistants and your federal Congressional Representatives in their local offices about legislation affecting the PKU community.

Communication

  • Posting social media messages related to PKU to help spread the word about programs and initiatives.
  • Sharing NPKUA social media messages on your own social media platforms.
  • Writing about your experiences with PKU or a day-in-the-life of someone with PKU to be featured in NPKUA communications.

Education

  • Hosting an NPKUA table at local events in your community.
  • Speaking on behalf of NPKUA about your PKU experience.

Fundraising

  • Being interviewed for a newsletter article on why it’s important to financially support the NPKUA’s work.
  • Hosting a fundraiser for the NPKUA.
  • Calling other PKU families to ask for their new or renewed support of the NPKUA.
  • Volunteering for NPKUA fundraising events in your area.
  • Sharing how the NPKUA’s work impacted your life in a fundraising appeal.
  • Sharing your story about living with PKU in a fundraising appeal.

Research

  • Attending a nearby NPKUA meeting with drug and biotech companies that are looking at developing new treatments for PKU.
  • Serving as a beta-tester for updates to the PKU Patient Registry.
  • Serving as a patient ambassador to participate in focus groups for emerging PKU products and research.

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