Add to Calendar 2/28/2019 8:45:00 AM 2/28/2019 12:30:00 PM 2019 Rare Disease Day The last day of February has been designated as Rare Disease Day in Massachusetts to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world. The event recognizes Rare Disease Day and the research being done in Massachusetts to treat and cure rare disease. Alone we are rare, together we are strong. Our agenda feature two panels with different points of view of the issue: a patient panel, which will discuss the struggles beyond diagnosis and treatment; and an industry panel, which will focus on how the biotech and pharma industry is going beyond treatment to healing the whole patient, as well as supporting the caregivers. Omni Parker House, 60 School St Boston MA 02108
Stroke & Rare Disease Advocate
Lisa is a seasoned advocate, motivational speaker and Co-Founder of Sisters@Heart Foundation. a nonprofit whose mission is to improve the lives of those affected by heart disease and stroke through funding research projects and providing financial assistance to heart and stroke families in need. She is also involved as a Committee Member in Rare New England, a nonprofit dedicated to spreading awareness and providing education to stakeholders in the rare disease community. With her first being 20 years ago, Lisa has survived four strokes and was finally correctly diagnosed with Moyamoya Disease after her last stroke four years ago. Lisa underwent double brain surgery to treat her rare disease far from home to restore her health. For years, Lisa has engaged as an advocate, lobbyist and volunteer with the American Heart Association and has served as a Go Red for Women National Spokesperson. Today, Lisa speaks all over the country as a motivational survivor, patient advocate and stroke and heart health ambassador with hundreds of media engagements under her belt. Lisa lives in Massachusetts with her husband and two children. To learn more about Lisa, visit lisadeck.com or follow her on Facebook, Twitter and Instagram.

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