Head of Business Development & Patient Advocacy, Pulse Infoframe
Bio: Dan Lewi has been Head of Business Development and Patient Advocacy at Pulse Infoframe since 2021. He develops relationships with the many clients who can benefit from registries powered by the healthie 2.0 platform. Dan’s varied background in rare disease advocacy began when he and his wife founded the Cure & Action for Tay-Sachs (CATS) Foundation in the UK, after their daughter Amélie was diagnosed with Tay-Sachs. With no national charities to provide support, the CATS Foundation has nonetheless proved instrumental in helping pharma develop treatments for Tay-Sachs and Sandhoff diseases, ranging from gene therapy programs to drug repurposing studies. Dan has over ten years of experience in medtech and advocacy, and he has also served as Chairman of the European Tay-Sachs and Sandhoff Charity Consortium since 2012. Dan is fully aware of the patient voice, and he consistently puts patients and their needs at the forefront of clinical discussion.
Learn more about Pulse Inforframe by visiting their website.
Q: This will be CamRARE’s 5th summit. What is the most impactful and promising change you’ve seen happen in rare disease progress in the last 5 years?
Companies are more engaging with patient groups.
Q: How has your work impacted rare disease progress over the last 5 years?
We have seen clinical trials for Tay-Sachs and Sandhoff.
Q: What next? What do you want to see happen or change in the next 5 years that will have the most impact on diagnostics, care or treatment for those affected by rare conditions?
The regulators willing to adopt new and unique clinical trial design.