Unite our Global Community: Janet’s Story

This December, we’re sharing stories from people who have have helped unite our global community so that patients don’t feel as alone. We’ve made great strides in recent years, but there is still much work to be done. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

When I started the Foundation my main focus was to connect with others and to help patients

Janet Segall was diagnosed with pemphigus vulgaris in 1983. She founded the IPPF in 1994 with the goal of connecting others and helping patients. She continues to support patients as a Peer Coach, a role she has had for almost 10 years. “When you are diagnosed with such a rare disease as pemphigus and pemphigoid, one of the most difficult things is to find others to relate to. It makes you feel alone, like you’re the only one with the disease. A Peer Coach can help someone in so many ways. As a Peer Coach, I get to help patients understand their disease and their feelings. A Peer Coach has been there, so they can be there for both patients and their support system.”

When she was asked how people can get involved with the IPPF, Janet suggested:

“There are so many ways. You could volunteer your time, share your story, or participate in a clinical trial. However, sometimes volunteering isn’t possible so making a donation can have a huge impact. You could either make a one-time donation, or become a Healing Hero. Healing Heroes make monthly donations and help keep the IPPF alive to make sure we are always present for others who are diagnosed with these diseases.” 

Our goal at the IPPF is to improve the quality of life for all people affected by pemphigus and pemphigoid. Join us to unite our global community, now through the end of the year. Your tax-deductible donation ensures our patient support programs are available to all those who need them today, tomorrow, and for years to come.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.