Manuel Lubinus’ Post

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Chief Science Officer- MSU

Today, we were live at the Dermatomyositis' Externally-Led Patient-Focused Drug Development Meeting. Myositis Support and Understanding Association, Inc. (MSU) and The Myositis Association(TMA) partnered to bring this advocacy opportunity to all our Dermatomyositis patients. Thanks to our MSU president Lynn Wilson who lead us into this journey and Paula Eichenbrenner, MBA, CAE for making this possible as a true Patient Organization Partnership. Thanks to the FDA team for guiding us and keep us grounded on the patient voices. Also kudos to all the organization and patient volunteers(Benita Moyers, Karen Cheng, Martha Arnold,Linda J. Kobert) who managed the behinds the scenes details, listening to fellow patients and made all of this possible. It took us a year to get here, from the Letter of Intent to the FDA last May. We worked out a plan, hired HPM as consultants , started a fundraising campaign (six industry partners volunteered), and, most importantly of all, we asked for patients volunteers from every walk of life to tell their stories. The stories reflected the current status of the patient symptoms and The Adult Dermatomyositis Patient Focus Drug Development (PFDD) session is a conference organized by patients and patient organizations for patients. It serves as a unique platform for individuals living with adult dermatomyositis to come together and actively participate in the drug development process. In the session, patients share their personal experiences, insights, and priorities regarding the management and treatment of dermatomyositis. The aim was to ensure that the patient's perspective is central to decision-making processes, ultimately influencing the development of new therapies and improving the overall care and support available to those affected by DM. Finally wouldn't have been able to do this without the support of the Myositis Research Community around the world, and here in the USA to our Key Opinion Leaders that volunteer their time to present today: Dr. Lisa Christopher-Stine and Dr. Rohit Aggarwal, introducing the stories of the patients. You can see the live event here (and the future recording of it) here: www.dermatomyositis-el-pfdd.corg.

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