2020 Rare Disease Day

February 28, 2020 9:30 AM - 2:00 PM

Omni Parker House, 60 School St Boston MA 02108

Add to Calendar 2/28/2020 9:30:00 AM 2/28/2020 2:00:00 PM 2020 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.

This year’s agenda will feature two panels: one from the patient perspective on how they’ve turned their diagnoses into their life’s work, finding empowerment through advocacy and action; and one from the industry’s perspective on how researchers and providers are not only tailoring a therapy for a specific patient but also the entire patient experience, and how this outlook has shaped their careers.

Alone we are rare, together we are strong. 

To inquire about sponsorship opportunities, contact Laura Rudberg.
  Omni Parker House, 60 School St Boston MA 02108
Patient Advocate, LGMD2B, Muscular Dystrophy Association
Chris Anselmo, 33, currently serves as a market intelligence manager on the Healthcare Partnerships team within the Muscular Dystrophy Association’s national office. Chris has a personal connection to MDA’s mission — he is also an individual living with Miyoshi myopathy/limb-girdle muscular dystrophy type 2B (LGMD2B), an adult-onset form of muscular dystrophy. For the first 21 years of his life, Chris had no signs of muscle weakness. Then one night in 2008, while going for a run, he noticed his legs tired out quickly. Over the next 12 years, Chris has experienced progressive muscle weakness, numerous falls, and a gradual loss of mobility. Today, Chris is a patient advocate who is passionate about raising awareness for rare diseases, educating healthcare stakeholders on the power of the patient experience, and helping anyone dealing with adversity — especially newly diagnosed patients navigating the ups and downs of a life-changing diagnosis. Chris holds an MBA from Boston College and a bachelor’s degree in marketing from Northeastern University.

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