Get Involved

“If you cannot do great things, do small things in a great way.”
-Napoleon Hill

How to Help

By becoming involved, you will make a positive difference for those affected with PRS. Here are some ways that your involvement will help.

Volunteer Your Time & Talents

Let us know how you can help support the Parry Romberg Foundation.

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Ways to Help

1. Reach out

Reach out to your local representative and state senators to explore ways they can support you.


2. Rare Action Network

Join the Rare Action Network (RAN) for your state by clicking here.

3. Rare Disease Day

Join in the annual celebration of Rare Disease Day every February 29th/28th sponsored by NORD. Obtain details on the NORD website here.

4. Share Your Story

Share your story about receiving your PRS diagnosis and how you have come to terms with the day to day challenges. Learn more and share your story here.

5. PRS Kids Corner

Draw us a picture of what it feels like to have PRS. Email it to us here!