Introducing FaceForwardwithTSC.com: An Exciting New Resource for Facial Angiofibroma
Nobelpharma America is proud to announce the launch of FaceForwardwithTSC.com. This new educational resource is curated for those seeking to better understand and manage facial angiofibroma associated with tuberous sclerosis complex. Read More
Watch the 2022 World TSC Conference Videos
All 2022 World TSC Conference videos are now available. By accessing these videos, you can learn more about clinical consensus guidelines on surveillance and treatment of TSC, research updates, caregiver resources and more! Watch recordings of the general sessions, large lectures, panel presentations and specialty topic sessions now at tscalliance.org/2022conferencevideos. Read More
We Need Your Input!
In 2023, the TSC Alliance will update our five-year strategic plan, so we are launching a comprehensive online Constituent Survey to assess what the organization is doing right, identify those things we can do better and lay the groundwork to ensure our planning efforts are on the right track. Read More
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to help determine how medications such as everolimus (Afinitor®, Zortress®) or sirolimus (Rapamune®) and TSC conditions affect the risk of getting COVID-19 and its severity. Read More
In Memory Of Ken Johnson
The TSC Alliance and Endowment Fund Board of Directors recently established the Ken Johnson Memorial Fund to honor and pay tribute to Ken Johnson – a grandparent, organizational leader, compassionate volunteer and inspiration to the TSC community. Ken passed away January 27, 2021 at the amazing age of 90. Ken and his wife Shonnie were first inspired into action by his daughter-in-law, Emily, who served as the Northern California Representative, beginning after her daughter Annie’s diagnosis 1984, and over the next dozen years. They witnessed how Emily literally spent so much of her time providing support for newly diagnosed families, raising... Read More
CARING through COVID Survey
For many families of children/adults with genetic syndromes associated with developmental disabilities, the impact of COVID-19 restrictions on access to educational and medical services continues and evolves. We would like to learn about the continued experiences of these families after many months of virtual learning and online therapeutics. The new survey is similar to the previous version. It will take 10-20 minutes to complete. The survey is intended both for individuals who completed the previous version as well as new participants. Take the Survey Read More
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC Clinic Director and staff. The 5-minute survey is anonymous – your answers will not be linked to any information that can identify you. Read More
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to help determine how medications such as everolimus (Afinitor®, Zortress®) or sirolimus (Rapamune®) and TSC conditions affect the risk of getting COVID-19 and its severity. Read More
Welcome from Nobelpharma America!
Nobelpharma America is the first global subsidiary of Nobelpharma Co. Ltd (“Nobelpharma”), headquartered in Tokyo, Japan. Founded in 2003, Nobelpharma received its first drug approval in Japan in 2008. Since then, Nobelpharma has received approvals for over 15 drugs and devices in Japan across a wide range of indications, bringing life-changing treatments to patients, caregivers, and health care providers. Read More
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC Clinic Director and staff. The 5-minute survey is anonymous – your answers will not be linked to any information that can identify you. We invite you to complete this survey any time after you’ve been to the TSC Clinic. If you have any questions, contact Jo Anne Nakagawa at jnakagawa@tscalliance.org. Take Survey You can also submit a TSC Clinic Comment Form directly to the TSC Alliance to share a compliment or concern about a... Read More