Working Rare: Employment Considerations for People Living with Rare Diseases

Tue, Sep 22, 2020 2:00 PM EDT{LOCAL_TZ}

Working Rare: Employment Considerations for People Living with Rare Diseases

Tue, Sep 22, 2020 2:00 PM EDT

Rare disease patients make important workplace contributions. How do employees with rare diseases get the job done while also managing their health? What rights do rare patients have and which resources are available to help them perform their duties? How can employers create a supportive environment for employees with rare conditions? Join us to hear perspectives from a working rare disease patient, a representative from the New England Americans with Disability Act (ADA) Center, and a human resources director. This webinar is perfect for patients, caregivers, advocates HR personnel and the public.

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Kathy Gips
Director of Training
New England ADA Center
Kathy Gips provides ADA training for which she has earned a national reputation. She assures quality in the provision of technical assistance and information dissemination at the New England ADA Center. Kathy has expertise in all titles of the ADA, Sections 501, 504 and 508 of the Rehabilitation Act, and related state disability rights laws concerning employment, public accommodations and housing. In addition to in-person trainings, Kathy develops ADA guidance material and web courses.


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Norine Schwarzchild
Director of Human Resources
National Organization for Rare Disorders
Norine Schwarzchild joined NORD in December, 2013 as Director of Human Resources. Norine is a SHRM-certified HR professional and has 20 years of experience in both non-profit and for-profit organizations. Norine received her Master’s Degree in Human Resources Management from Manhattanville College and her B.A. in Political Science from SUNY Purchase.

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Lisa Massey
Operations Specialist
Association of American Medical Colleges
Lisa Massey is Operations Specialist at the Association of American Medical Colleges. She works on the implementation of value-based care models in Medicare, including bundled payments, accountable care organizations, and other capitated arrangements. She was diagnosed with a primary immunodeficiency in 2003 and is the co-founder of Immune Competence.
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Katie Kowalski
Senior Program Manager
National Organization for Rare Disorders


Katie Kowalski is the Senior Program Manager for NORD’s Educational Initiatives.  In that role, she works to develop and implement educational programs for medical professionals, patients and their families.  She serves as a Program Manager for key programs within NORD’s Education Department including continuing medical education, the educational webinar series and student programs.

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