In this NORD Guest Blog, the founder of the Parry Romberg Foundation discusses the 1825-2025 history of PRS and what this moment means for hundreds of Americans with this life-altering autoimmune disorder.
July 2, 2025
In 1825, Dr. Caleb Parry documents the first description of the rare disorder that will later bear his name. Its severity and symptoms vary significantly from patient to patient, but they share the symptoms of gradual shrinkage and degeneration of the skin and tissue on one side of their face.
It will take a second description from Dr. Moritz Romberg in 1846 for doctors to develop a fuller understanding of this disorder and name it Parry Romberg Syndrome (PRS). In twenty-five more years, it will be given a scientific name, progressive hemifacial atrophy. Unfortunately, despite having two names, scientists’ understanding of this disorder will remain far from complete.
This story is about what has happened — and hasn’t happened — during the rest of this disorder’s two-hundred-year history.
Medical diagram of two Parry Romberg Syndrome patients circa 1920, attributed to Dr. Byrom Bramwell, Atlas of Clinical MedicineIn 1954, a ten-year-old girl learns she has a rare and life altering autoimmune disorder for which there is no known cause, treatment, or cure. The disorder will progressively waste away fat, muscle, tissue, and bone on one side of her face. It will come with a number of accompanying neurological and ocular disorders as well.
As the young girl grows into adulthood, her disorder progresses. She faces many medical challenges and undergoes many surgeries. But she never loses hope that there will be a treatment or a cure. She personally invests decades of effort into raising awareness among doctors and calling for more research, to no avail. As the years go by, hundreds of children learn they also have PRS, and are told the same thing: no known cause, treatment, or cure.
In 2021, this ten-year-old girl, now in her 70s, establishes the Parry Romberg Foundation, Inc. with the support of her children, grandchildren, and the National Organization for Rare Disorders (NORD). The Foundation’s mission is to connect and support PRS patients, raise awareness, and explore all possible opportunities for research.
I am that ten-year-old girl, Jo-Ann D’Angelo, and I continue to work every day to bring awareness to PRS.
Jo-Ann D’Angelo, founder of the Parry Romberg Foundation, in a Rare Disease Day shirtIn 2025, two hundred years after its first discovery, the Parry Romberg Foundation has launched the 1825-2025 Campaign to bring attention to the lack of continuing research into this disorder.
While some important research has been done over the years — studying potential autoimmune connections, imaging the brain to understand neurological involvement, and exploring surgical options to improve quality of life — Parry Romberg Syndrome remains largely misunderstood. No single cause has been identified, no cure exists, and treatments are often limited to managing symptoms or attempting facial reconstruction. Much of the published work has been in small case studies or isolated reports. This is why we are so passionate about supporting new, larger-scale research efforts that could uncover the root causes of the condition and open the door to better treatments.
I invite you to join us in this mission by visiting our 1825-2025 Campaign page at parryromberg.org, where you can learn more, take action, and contribute to the ongoing work of our Foundation. Every dollar raised brings us closer to the answers patients and families so desperately need.
Please, support our efforts to help solve this centuries-old medical mystery.
This rare and orphaned disorder affects children of all races globally who grow into adulthood without the prospect of hope. Two centuries of neglect for a disfiguring childhood disorder with accompanying neurological, ocular and rheumatology symptoms is unacceptable, especially when new scientific advancements like AI are available to assist with research.
The voices of the patient community and our supporters are a powerful force for change. My voice eventually led to the creation of a foundation — just imagine what your voice can do when you use it.
Learn about the 1825-2025 Parry Romberg Foundation Campaign and join the cause here: parryromberg.org/1825-2025-campaign
About the Parry Romberg Foundation:
The mission of the Parry Romberg Foundation, Inc., a NORD Member patient advocacy organization, is to PREVAIL over this rare and life altering syndrome and restore the lives of those affected. Learn more at ParryRomberg.org.
