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 Omni Parker House, 60 School St, Boston, MA 02108
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.
 
Lexi Pappas, Advocate, FSHD
Lexi Pappas is an advocate for and is also diagnosed with FSHD, a type of Muscular Dystrophy. When she was first diagnosed she would hide her symptoms from friends and classmates, but as things progressed, she decided to open up and start spreading awareness about it. In 2016 she released a documentary sharing how her family lives with FSHD daily, and the struggles that come along with it. The documentary now has over 45,000 views on YouTube and was featured on Fox news Boston and many other sites. Since then, she has spoken in front of the FDA and NIH, collaborated with multiple research companies, created YouTube videos, held fundraisers, and made relationships with others living with FSHD along the way. When we are all in a room together, it no longer feels like a rare disease and that is what makes those connections so special. In daily life, Lexi is a video editor and producer at Dell Technologies, and volunteers her time editing videos for non-profit organizations.

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