Help solve the two-century old medical mystery of what causes
Parry Romberg Syndrome.

Our Focus

Treatments for Parry Romberg Syndrome are superficial and treat the symptoms only without addressing the underlying causes of the disease. The Parry Romberg Foundation seeks to remedy that inadequacy by promoting research into the disease mechanism and pursuing targeted therapies.

Connecting Patients with Physicians

The Parry Romberg Foundation has compiled a growing list of physicians within the US and around the world who specialize in treating the broad range of symptoms associated with PRS.

Search our database now to find a physician in your area.

Our Goal

Quality research requires substantial funding. Only RESEARCH will lead to effective treatments and ultimately a known cause and cure.

Understanding any potential genetic basis for PRS
Developing a potential rodent model of the
Establishing a patient registry and a foundational natural history study

NORD’s Restricted Research Grant for Parry Romberg Syndrome

A restricted research grant has been established through the National Organization of Rare Diseases (NORD) for the sole intent of initiating medical research for PRS. NORD acts as a broker in respect of insuring that any donations to the grant are 100% restricted for the ultimate purpose of medical research on PRS. Once the grant reaches $35,000 NORD will solicit research proposals and will award the monies to the most suitable research group. NORD uses the same standards as the National Institute of Health in selecting the most suitable research scientists. You can obtain more details through this link.

Other Organizations

Our Foundation seeks to engage with philanthropic organizations that are interested in supporting this orphaned life altering disorder and will help us reach our ambitious research goals.

1. The Parry Romberg Foundation will reach out to other rare disease foundations researching disorders with similar medical links in the hopes of partnering on research.

2. The Parry Romberg Foundation intends to develop a patient registry to ensure PR patient data is readily available to interested research scientists.

3. The Parry Romberg Foundation will take advantage of NORD’s IAMRARE Registry.