2020 Rare Disease Day

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

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.
 
Session Title Start Time End Time
Coffee and Networking
2/28/2020 9:30 AM 2/28/2020 10:00 AM
Welcome
2/28/2020 10:00 AM 2/28/2020 10:30 AM
Patient Perspectives: Diagnosis to Empowerment
Receiving a diagnosis for a rare disease is a devastating and life-changing event. Hear how these patients have turned their diagnoses into their life’s work, finding empowerment through advocacy and action.
2/28/2020 10:30 AM 2/28/2020 11:15 AM
Networking Break
2/28/2020 11:15 AM 2/28/2020 11:45 AM
Industry Perspectives: Working with Zebras One Stripe at a Time
Biopharma companies are using unique approaches to treating rare disease, realizing that each case is different from another. Hear 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.
2/28/2020 11:45 AM 2/28/2020 12:30 PM
Pledge4Rare Rare Disease Day 5K Run and 1 Mile Walk on Boston Common
For the fourth consecutive year, Sanofi Genzyme invites the Mass biotech community to join in a Rare Disease Day 5K Run/1 Mile Walk on the Boston Common. Register for the event at www.Pledge4Rare.com
2/28/2020 12:45 PM 2/28/2020 2:00 PM

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