Rare Disease, Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC), is Focus of New Disease Education Website Launched by Nobelpharma America

  • FACE FORWARD, a new website focused on disease awareness, has launched with educational content on facial angiofibroma, an aspect of tuberous sclerosis complex (TSC).
  • TSC, a rare disease, strikes approximately 50,000 people in the U.S. Roughly 80 percent of those cases present with facial angiofibroma.
  • FACE FORWARD also features background information about facial angiofibroma and TSC and a zip-code based tool that may help to locate certain treatment centers in the U.S.
  • Stories from people with facial angiofibroma and their caregivers are also offered on the site, aspiring to provide insights into living with facial angiofibroma associated with TSC.

BETHESDA, Md., Jan. 17, 2023 /PRNewswire/ — Facial angiofibroma, an aspect of a rare genetic disease called tuberous sclerosis complex (TSC), is the focus of a new online resource, FACE FORWARD, launched by Nobelpharma America, LLC, a pharmaceutical and medical device company headquartered in Bethesda, Maryland. 

TSC, which affects approximately 50,000 people in the U.S., causes non-cancerous tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs and skin. It usually affects the central nervous system and can result in a combination of symptoms including seizures, impaired intellectual development, behavioral problems, skin abnormalities and kidney disease. TSC is also believed to be a genetic cause of autism.

TSC-related facial angiofibroma may cause pink or red bumps on the cheeks, nose and chin and may appear differently between skin tones. Without treatment these may lead to bleeding, itching, redness and in some cases significant, permanent disfiguration if left untreated. Social isolation and a negative self-image can result.

FACE FORWARD offers educational content about TSC and facial angiofibroma, an online tool for use helping to locate local treatment centers, stories from people living with facial angiofibroma, and more.

“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. “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.”

About TSC-related Facial Angiofibroma

Facial angiofibroma, a condition that affects about 75 – 85 percent of people diagnosed with tuberous sclerosis complex (TSC), is characterized by non-cancerous tumors appearing on the face.

Facial angiofibroma can bleed spontaneously, impair eyesight and cause aesthetic disfiguration causing psychological and social stress.

Facial angiofibroma tumors are made up of blood vessels and fibrous tissue that can be the result of genetic mutation. Exposure to UV rays from the sun can also contribute to the development of facial angiofibroma tumors. Facial angiofibroma may look similar to other skin conditions such as rosacea or acne. Therefore, facial angiofibroma often goes overlooked as a diagnosis by healthcare practitioners. Changes in the skin may appear at birth for some individuals. Facial angiofibromas typically appear at early childhood and may grow in both number and size over time if left untreated.

About Tuberous Sclerosis Complex (TSC)

TSC is a rare genetic disease that affects approximately one in 6,000 live births. Nearly one million people worldwide are estimated to have TSC, with approximately 50,000 in the United States. TSC causes non-cancerous tumors, or hamartomas, to form in vital organs, including the skin. TSC may also cause facial angiofibromas, which are pink or red bumps usually located on the cheeks, nose and chin. Without treatment, these may cause bleeding, itching, redness, and significant disfiguration. Many individuals with TSC also present with autism, epilepsy, and other neuropsychiatric disorders. 

About Nobelpharma America 

Nobelpharma America, LLC (NPA) is focused on the commercialization of pharmaceuticals and medical devices that expand treatment options for people with rare diseases. In 2019, NPA became the first wholly owned global subsidiary of Nobelpharma Co., Ltd., which is based in Tokyo. The company, which is named after Alfred Nobel, remains committed to honoring his innovative and scientific legacy by developing treatments for diseases that often go overlooked because of the small number of individuals affected. For more information visit nobelpharma-us.com

Media Contact Information:         

Nobelpharma America, LLC     

                        Method Health Communications, LLC

Name: Douglas Loock, VP         

                        Name: Sheila Burke

Telephone: 301-708-9997           

                        Telephone: 484-667-6330

Email: [email protected]   

                        Email: [email protected]

SOURCE Nobelpharma America