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TSC Matters

June Note from the President & CEO

On May 15, the TSC Alliance joined TSC International (TSCi) to observe the seventh annual TSC Global Awareness Day, created to make sure that people worldwide were being diagnosed quickly with proper treatments and clinical care and to raise awareness and funds to propel research and spur more breakthroughs. Since then, the amount of awareness generated from this initiative has grown exponentially, and this year the 15 Facts were shared over 5,000 times reaching more than 300,000 people around the world. This is a testament to the incredible power of a galvanized global TSC community.

This week I’m visiting our partners at the TSC Alliance of Israel, our very first Global Alliance. This will be my third trip to Israel since they were established in 2014 and in working with our Israeli partners, we have learned a lot about establishing and fostering global relationships.  Because of all we learned from our collaborators in Israel, we have been able to expand to six global affiliates.

Two of our global partners, Tuberous Sclerosis Canada ST and the TSC Alliance of Mexico, are co-hosts for the 2019 International TSC Research Conference: Changing the Course of TSC, in Toronto, Ontario June 20-22.  This conference brings together leading TSC researchers from around the world to foster collaborations and set future priorities for research. It truly inspires hope to see the proliferation of interest in TSC research globally and how these collaborations have accelerated the pace of discovery. I look forward to sharing the outcomes of the conference later this year.

Finally, at the end of June I’ll be speaking in two sessions at the 2019 DIA Global Annual Meeting, which gathers stakeholders from around the world to collaborate around finding solutions to the most pressing healthcare challenges.  The first session, “How to Solve the Problem of Access for Rare Diseases,” aims to address critical access issues related to rare disease drug development and explore ways to ensure the patient and caregiver needs are incorporated into access and pricing decision-making. The second session, “Understanding and Exploring Elements of a Patient-Focused Product Launch,” highlights the importance of bringing the voice of the patient to the forefront in every stage of the drug development.

Although TSC is a “rare disease” we are part of a global community that together is raising awareness worldwide, accelerating cutting edge research to spur new breakthroughs, and working to reshape the healthcare system to ensure the patient voice drives the development of and access to new medications.

In hope,

Kari