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.
 
Director of Caregiver Support Services and Public Relations Frontotemporal Disorders Unit, MGH
Katie Brandt, MM is the Director of Caregiver Support Services and Public Relations in the Frontotemporal Disorders (FTD) Unit at Massachusetts General Hospital. Through this role, she provides leadership for research, education and community events aimed at understanding and supporting the caregiver experience for families impacted by Alzheimer’s Disease, Frontotemporal Disorders, atypical and young-onset dementias. As Co-Chair of the National Alzheimer’s Project Act (NAPA) Advisory Council on Alzheimer’s Research, Care and Services, Katie is able to connect with experts in the field of Alzheimer’s Disease and related dementias and contribute to federal policy initiatives and research priorities that promote health equity and person-centered care at every stage of dementia. Katie is a passionate advocate in the rare disease community, inspired by her personal experience as a former FTD caregiver for her late husband, Michael. Today, Katie is an Alzheimer’s caregiver for her father, Tom. Her experiences of love and loss embolden her to keep moving forward, determined that the cure of tomorrow is not so far from the care of today.

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