Tuberous Sclerosis Alliance and Nobelpharma to Celebrate Rare Disease Day with New Partnership

SILVER SPRING, Md., Feb. 24, 2021 /PRNewswire/ — Today, the Tuberous Sclerosis Alliance (TS Alliance) and Nobelpharma America, LLC (NPA) announced an ongoing collaboration. As part of this partnership, Nobelpharma will sponsor numerous programs that will focus on creating awareness of issues faced by individuals with tuberous sclerosis complex (TSC).
TSC is a rare genetic disease that causes tumors to form in vital organs; it’s also the leading genetic cause of both epilepsy and autism. Current estimates place TSC-affected births at one in 6,000. Nearly 1 million people worldwide are estimated to have TSC, with approximately 50,000 in the United States.
"We are excited to kick off 2021 with a range of activities that increase awareness of tuberous sclerosis complex," stated Yoshika Kida, President and CEO, NPA. "The Nobelpharma team is delighted to join the conversation about TSC. Earlier this month Nobelpharma America worked with the TS Alliance to organize a panel of individuals with TSC and care providers to listen and learn from their life experiences."
Mr. Kida continued, "In anticipation of Rare Disease Day at the end of February, Nobelpharma America is sponsoring a TS Alliance webinar on February 26 entitled Dermatologic Manifestations of TSC and Management." Anyone interested may register online.
Rare Disease Day, a worldwide event, takes place February 28, 2021. Its main objective is to raise awareness among the general public and decision-makers about rare diseases and their impact on people’s lives.
"This is an exciting announcement to coincide with Rare Disease Day," explained Kari Luther Rosbeck, President and CEO of the TS Alliance. "The TS Alliance is proud to work with Nobelpharma as they become more involved with the TSC community. NPA and our organization share the mutual goal of bringing much-needed therapies to individuals with tuberous sclerosis complex."
This year also marks the first time Nobelpharma will sponsor and participate in the TS Alliance’s annual Step Forward to Cure TSC Global Virtual Walk-Run-Ride. This event on May 15-16 will increase awareness and raise funds to improve the lives of those affected by TSC. Other activities Nobelpharma will sponsor include scientific webinars, a podcast, and social media outreach. Nobelpharma is delighted to partner with the TS Alliance to connect with individuals, families, and friends of the TSC community. More information will be forthcoming about many of these activities as the year progresses.
About the Tuberous Sclerosis Alliance The TS Alliance is dedicated to finding a cure for tuberous sclerosis complex, while improving the lives of those affected. For more information, visit tsalliance.org, call 800-225-6872 or email info@tsalliance.org.
About Nobelpharma America Nobelpharma America, LLC (NPA) is focused on the commercialization of pharmaceuticals and medical devices for patients with limited treatment options. NPA is located at 4520 East-West Highway, Suite 400, Bethesda, MD 20814. For more information go to nobelpharma-us.com. Primary contact: Sherry Prasad; Cell: 301.244.5951, Email: sherry.prasad@nobelpharma-us.com. NPA is a wholly owned subsidiary of Nobelpharma Co., Ltd., Tokyo, Japan.
Contact Jaye Isham, jisham@tsalliance.org Vice President, Communications Strategy Tuberous Sclerosis Alliance
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SOURCE Tuberous Sclerosis Alliance