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
The Romberg’s Connection
To join The Romberg’s Connection you should email rombergs@hotmail.com.
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
https://rarediseases.org
The Food & Drug Administration (FDA)
https://www.fda.gov.
The National Center for Advancing Translational Sciences (NCATS)
http://ncats.nih.gov.
Children’s National Research & Innovation Campus
https://childrensnational.org.
Rare Disease Research & Info – Patient Advocacy
https://ultrarareadvocacy.com.