Knowledge, Support & Resources

No child should learn that half their face is victim to a rare disorder without a known cause, treatment, or cure.

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Welcome to The Parry Romberg Foundation Website. Our website is dedicated to supporting patients and their loved ones coping with Parry Romberg Syndrome by providing knowledge, support and resources as well as opportunities for fundraising and research. Our Foundation is committed to prevailing over this rare and life-altering syndrome and improving the lives of those affected.

PLEASE join us in our efforts to find a cure.

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About The Parry Romberg Foundation

EIN # 61-2004567

The Parry Romberg Foundation Inc is a registered 501(c)(3) charity organization. The information provided on this website is for the benefit of the Parry Romberg syndrome community.

Our Mission


Providing knowledge, support, and resources to those affected by this life altering syndrome.


Explore and pursue all opportunities for medical grants, funding and research that will lead to positive outcomes for the PRS community.


Open fundraising opportunities on behalf of a medically ignored population in urgent need of a proper diagnosis, treatment options and ultimately a cure.

Donate Today

Your donations will help unlock the medical mystery and restore faces and lives.