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.
 
Massachusetts State Representative
Hannah Kane (R – Shrewsbury) serves as the State Representative for the Eleventh Worcester District, representing the towns of Shrewsbury and Westborough (precincts 4 and 5), and was sworn in to serve her third term in January of 2019. Hannah graduated from Boston University’s School of Management in 1993. Hannah has significant experience in both the public and private sectors. Hannah serves as a Member of the Joint Committee on Ways and Means, the Ranking Minority Member of the Joint Committee on Public Health, and the Ranking Minority Member of the Joint Committee on Cannabis Policy. Hannah is a member of the Central MA Opioid Task Force, a State Director for the national Women in Government Foundation, and a Board Member of the Massachusetts Caucus of Women Legislators. Hannah serves as Minority Leader Bradley H. Jones’ designee on the Massachusetts Food Policy Council and the Massachusetts Commission on Unaccompanied Homeless Youth and was appointed by Governor Baker to the Commission on Family Care and Child Care Services. She served on the Special Commission on Local and Regional Public Health and on the 2018-2019 Regional Transit Authority Task Force. She is a Founder and Co-chair of the first in the nation Food System Caucus. Hannah received a 2019 Massachusetts Public Health Association Legislative Leadership Award in recognition of her commitment to building an effective, efficient, and equitable local public health system. She also received a 2017 American Nursing Association of Massachusetts Friend of Nursing Award for her work on marijuana policy. Hannah and her husband Jim live in Shrewsbury with their three children, one of whom has two chronic diseases.

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