Extraordinary Patients

Julie Power – Irish GPA/Wegener’s Patient Establishes (and Grows) Support Organization for Fellow Patients

The Vasculitis Ireland Awareness (VIA) Organization at a past conference

In 2010, Julie Power, a Granulomatosis with polyangiitis GPA (Wegener’s) patient, saw a need to create a support group for patients with vasculitis in Ireland. Funded by donations from a biking event led by her husband and sons, the Vasculitis Ireland Awareness (VIA) was born.
Over the last 17 years the VIA has grown from seven members to more than 300 patients and healthcare professionals throughout Ireland.

Since 2011, the VIA has held an annual vasculitis conference featuring presentations by vasculitis and health care specialists. Hundreds of patients wanting to learn about the latest research and developments in their country and worldwide attended these conferences.

For Julie, collaborating with other organizations is the key to ultimately improving choices and options for the patient community.

“We have always worked closely with local and national organizations who share issues with us,” says Julie. “Through the Irish Platform for Patient Organizations, Science and Industry, (IPPOSI), we have become more aware of the Irish Health system and how we as patients can have a voice.

I undertook a 14-month intense course with EUPATI (European Patient Academy in Therapeutic Intervention) in Research and Development. Through this program, I have been able to become more actively involved in this area and to make contact with other European patient support groups.”

Julie believes that being a patient with GPA Wegener’s allows her to share her valuable perspective and experience with medical professionals and vasculitis researchers.

“Since doing the EUPATI course, I have given many talks on the patient experience. For me the question is: How can we impact research from the design stage and generally raise awareness of vasculitis?

This year I talked to first and final year medical students about living with vasculitis, which was brilliant as I strongly feel if we can get involved at the training stage, they will remember something about this group of diseases.”

For more information about the Vasculitis Ireland Awareness group, visit their website at http://vasculitis-ia.org