Beyond the Diagnosis in the News August 3rd, 2015

By: Susan Donaldson James

Patricia Weltin fought relentlessly to have doctors finally recognize the rare diseases that have ravaged her two daughters’ lives — hypermelanosis and Ehlers-Danlos syndrome.

Olivia, 19, has a deformed hand and foot, as well as scoliosis. She has undergone 21 surgeries, including one for a tethered spinal cord. Hana, 16, just had a hip dislocation. “As a mom watching one child in pain is so very hard,” said Weltin, a single mom from Rumford, Rhode Island. “Watching both children in pain is unbearable.”


February 5, 2015 Contact: David Orenstein 401-863-1862

Persons with rare diseases are individuals, not cases. “Beyond the Diagnosis,” an art exhibit on display this month at the Alpert Medical School, showcases their humanity even as it also introduces students to their complex medical needs. The exhibit is open to the public during business hours.
PROVIDENCE, R.I. [Brown University] — Whenever in their careers Alpert Medical School students encounter a patient with a rare disease, it may rekindle the empathy and insight they can glean from the portraits of more than 20 people — mostly children — that hang on the medical school building’s walls this month.

Jayson By Dana Griffin


PROVIDENCE, RI- Bright, smiling little faces- just 17 of the 30-million Americans living with a rare disease.

Rare Disease United Foundation executive director, Patricia Weltin said, “They hear rare disease and they think, uncommon. But, that’s not the case. I mean there are more people with rare diseases than AIDS and cancer combined.”

Some of those patients and their families were at Brown Medical School Friday night as the Beyond the Diagnosis art exhibit was unveiled.

What the paintings don’t show is the pain of living with a rare disease. There is no medicine or countless trips to the hospital.

Rhode Island Journal of Medicine

March Edition 2015 

Click on the photo