Nobelpharma America, a pharmaceutical and medical device company headquartered in Bethesda, Maryland, has launched an educational website called Face Forward. The website brings awareness for facial angiofibroma, an aspect of the rare genetic disease tuberous sclerosis complex (TSC).
Face Forward brings the personal stories of affected individuals and their caregivers, which can help others with the same condition feel like they are not alone. In addition, the new website features a zip-code based tool that can help people search for TSC Centers of Excellence and clinics across the US.
“Congratulations to Nobelpharma on the launch of Face Forward, a helpful tool for people diagnosed with facial angiofibroma,” said President and Chief Executive Officer of the TSC Alliance, Kari Rosbeck, in Nobelpharma’s press release. “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.”
In March 2022, Nobelpharma received approval from the US Food and Drug Administration (FDA) for its topical treatment for facial angiofibroma called Hyftor (sirolimus topical gel) 0.2 percent. Hyftor became the first FDA-approved topical treatment for facial angiofibroma associated with tuberous sclerosis.
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About TSC-Related Facial Angiofibroma
Facial angiofibroma is characterized by non-cancerous tumors appearing on the face and these tumors are composed of fibrous tissue and blood vessels. This condition appears as pink or red bumps usually located on the cheeks, nose and chin, and impacts around 75 to 85 percent of people diagnosed with TSC.
The size and number of angiofibroma tumors can vary between affected individuals. This rare condition usually appears at early childhood, but the size and amount of facial angiofibromas may increase over time if left untreated.
Facial angiofibroma can bleed spontaneously and impair eyesight. In addition, the tumors can significantly affect a person’s social life because of their visible symptoms.
In some cases, facial angiofibroma can look like other skin conditions such as acne or rosacea, which is a reason why a healthcare practitioners may miss a facial angiofibroma diagnosis.
Different treatment methods exist for facial angiofibroma, which include cryotherapy, surgical excision, laser therapy and topical therapies.
Around 50,000 people in the US are affected by TSC, which causes non-cancerous tumors to form in vital organs, including the skin. Many people with TSC also have autism, epilepsy and other neuropsychiatric disorders conditions.
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