Support & Services

“The secret of getting ahead is getting started.”
-Mark Twain

Find the Help You Need

1. Find a Physician

Use our interactive map to find a physician near you. Click here to get started!

2. NORD's patient assistance programs

NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. Click here to visit their site.

3. Current Sources of Medical Reference

4. Support Communities

Two on-line support communities currently exist:
The Romberg’s Connection

To join The Romberg’s Connection you should email

Facebook Group for PRS
This is a private group and you have to ask to join. To join please click the link above.

5. Informative Websites

Other informative websites that provide helpful information include:

National Organization for Rare Diseases Definition

The Food & Drug Administration (FDA)

The National Center for Advancing Translational Sciences (NCATS)

Children’s National Research & Innovation Campus

Rare Disease Research & Info – Patient Advocacy