FOR IMMEDIATE RELEASE
Financial Assistance From The Assistance Fund Now Available for Eligible People Living With Epidermolysis Bullosa
ORLANDO, Fla., September 25, 2023 —The Assistance Fund, an independent charitable patient assistance organization that helps patients and families facing high medical out-of-pocket costs, today announced the launch of a new financial assistance program for people living with epidermolysis bullosa (EB). The program is designed to help eligible individuals pay for their out-of-pocket medical costs for treatment, such as copayments, health insurance premiums, and incidental medical expenses related to the condition.
Epidermolysis bullosa is a rare connective tissue disorder with many genetic and symptomatic variations.¹ All types of EB share the prominent and painful manifestation of extremely fragile skin that blisters and tears with minor friction or trauma. More than 50% of a person’s body affected with EB may be an open wound. With no known cure, the standard of care is palliative in nature, consisting of pain management, wound care, symptom relief, and preventative bandaging. EB causes numerous complications and secondary illnesses that require interventions from a range of medical specialties. EB is a painful, debilitating disease that affects people living with it physically, emotionally, and financially.
“In the EB community, we refer to the disorder as ‘the worst disease you’ve never heard of,’” said Brett Kopelan, Executive Director of debra of America and member of TAF’s Board of Directors. “As the father of a teenage daughter living with EB, I know firsthand how devastating the diagnosis is and how desperately family members and caretakers want to ease their loved one’s excruciating pain. I am proud to serve on the Board of an organization that is ensuring cost is not a factor in linking families to much-needed treatment.”
“Many parents who have children living with epidermolysis bullosa face the heartbreaking reality that they can’t afford the treatment required to control their children’s painful symptoms,” said Danielle Vizcaino, President and CEO of The Assistance Fund. “We are tremendously grateful to our donors for helping us launch the Epidermolysis Bullosa Financial Assistance Program so that children facing an EB diagnosis can improve their quality of life.”
To learn more or determine eligibility for financial support, visit tafcares.org or call (833) 570-2833 to speak with a Patient Advocate.
A list of all the disease programs available from The Assistance Fund can be found on the website tafcares.org.
About The Assistance Fund
The Assistance Fund (TAF) is an independent charitable patient assistance organization that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses. The Assistance Fund currently manages nearly 90 disease programs, each of which covers all the FDA-approved medications that treat a specific disease named in the disease program. Since its founding in 2009, TAF has helped nearly 180,000 children and adults access the treatment they need to stay healthy or manage a life-threatening, chronic, or rare disease. To learn more about The Assistance Fund, or for information on how to donate, please visit tafcares.org.
Media Contact
Margaret Figley
Senior Director of Communications
margaret.figley@tafcares.org
¹ Mayo Clinic, “Epidermolysis Bullosa,” https://www.mayoclinic.org/diseases-conditions/epidermolysis-bullosa/symptoms-causes/syc-20361062, accessed August 2023