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
Massachusetts House of Representatives
Hannah Kane (R – Shrewsbury) serves as the State Representative for the Eleventh Worcester District, representing the towns of Shrewsbury and Westborough, precinct 4, and was sworn in for her fifth term in January 2023. Hannah graduated from Boston University’s School of Management in 1993 and she has significant leadership experience in both the public and private sectors. Hannah serves as the Ranking Minority Member of both the Joint Committee on Health Care Financing and the Joint Committee on Public Health, and she is also a Member of the Joint Committee on Mental Health, Substance Use and Recovery and the new Joint Committee on Racial Equity, Civil Rights and Inclusion. Hannah is a member of the Central MA Opioid Task Force and a State Director for the national Women in Government Foundation, and she is Co-Chair of the Massachusetts Caucus of Women Legislators. Hannah serves as Minority Leader Bradley H. Jones designee on the Rare Disease Advisory Council and was the lead sponsor of the legislation that created the RDAC. Hannah is a Founder and Co-chair of the first in the nation Food System Caucus and served as a member of Governor Baker’s Food Security Task Force. Last session, Hannah launched the MA Legislative Caucus on Cancer Awareness with former Rep. Thomas Golden. In June 2021, Hannah received a Rare Impact Award from the National Organization for Rare Disorders and received an award from the Massachusetts Environmental Health Association in 2022 for her leadership on public health legislation. Hannah received a 2019 Massachusetts Public Health Association Legislative Leadership Award and 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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