Nobelpharma America is launching FACE FORWARD, a website focused on education and awareness of a rare disease known as facial angiofibroma, which is an aspect of tuberous sclerosis complex (TSC).
The website will give patients background information along with a ZIP-code-based tool for finding local treatment centers.
In addition, the site will feature stories from people living with facial angiofibroma and their caregivers. Patients will be able to connect with personal stories from others living with the debilitating disease.
“FACE FORWARD is an excellent complement to the medical information offered on the TSC Alliance website and is a welcome additional resource to our community,” TSC Alliance President and CEO Kari Rosbeck said in a press release.
TSC is present in about 50,000 people in the U.S., and 80% of those affected also present with facial angiofibroma.
The disease presents as non-cancerous tumors that grow in the brain and other organs such as the kidneys, heart, eyes, lungs and skin.
As a result of the tumors pressing on a person’s central nervous system, patients can experience seizures, impaired intellectual development, behavioral problems, skin abnormalities and kidney disease.
In addition, facial angiofibroma may cause red bumps anywhere on the face, which can eventually bleed, itch or cause permanent disfigurement.
In April 2022, Nobelpharma became the first U.S. pharma to get FDA approval for a topical treatment for facial angiofibroma. Prior to the approval, traditional treatment options included dermabrasion, surgical excision and laser therapy. Nobelpharma’s topical treatment was approved for use in Japan back in 2018.