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.
 
Head, Hematology and Rare Disease, Takeda Pharmaceuticals
Cheryl joined Takeda in September 2019 as the Head of the Rare Disease U.S. Business Unit. At Takeda, she works to build on the strength of Takeda’s rare disease portfolio and capabilities focusing on rare bleeding disorders, lysosomal storage disorders (LSD), hereditary angioedema (HAE) and endocrine treatments. As a global, values-based, science-driven biopharmaceutical leader, Takeda aspires to transform the treatment of rare diseases and is committed to helping enable faster diagnosis of rare diseases and access to treatments. This commitment includes spearheading initiatives like the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease, a multidisciplinary group of experts from around the world who have brought their creativity, technological expertise, and passion to accelerate the time to diagnosis. With a strong legacy of treating rare diseases, Takeda puts the patient at the center of everything they do by focusing on the core Takeda-ism pillars of patient, trust, reputation and business (PTRB) to guide their rare disease efforts. This year, Takeda is celebrating Rare Disease Day by honoring a "Constellation of Rare Stars," and sharing the stories of 29 patients, families, caregivers, health care professionals and community members who have helped to “Reframe Rare.”

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