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 Speaker
Shauna Sperou is 15 years old and was born with a rare genetic disease called Rothmund-Thomson Syndrome. She is a Freshman in High School and has been enjoying her time on a Robotics team for the past 3 years. She is very involved with RTS Foundation, advocating about her disease and raising money for research. She has also been involved in NORD's Running For Rare community for the past 6 years.

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