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
Director, Patient Advocacy, BlueRock Therapeutics
Marta has 20 years’ experience in the biotech industry. She has been with Aegerion Pharmaceuticals in Cambridge MA since 2013. She has broad experience ranging from commercial operations, supply chain, and patient advocacy. Most recently, Marta has worked to facilitate importation of drug products through Named Patient Access and has built strong partnerships with patient communities in the US and International markets, focusing on rare disease products. Previously she was with Genzyme, working in the International Charitable Access Program which provided access to treatments for patients worldwide. Marta holds a Bachelor of Science in Business Management and is currently a candidate for a Master of Science in Project Management and Operations (Jan 2020).

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