Patient Leader

Lydia Seiders, is a passionate advocate, driven to provoke positive changes globally. Her background includes roughly 20 years of advocacy and 15 years of policy work. She serves as an adviser globally for grassroots efforts, with work published on national and international platforms. In 2016, her oldest daughter was diagnosed with a rare form of bone marrow failure. At her daughter’s request, she worked endlessly to create a cause within her daughter’s fight and has been successful on an international scale. Worldwide, she partners with bone marrow registries and foundations to ensure patients have accurate information pertaining treatment options. As a result of this work, she was appointed as the first Volunteer Maryland State Ambassador for the NORD’s Rare Action Network in 2017. Nationwide, she partners with advocates to act on policy impacting the rare disease community. Statewide, she leads educational initiatives and develops state based campaigns to increase awareness.


Hagerstown, MD


Best in Show: Facebook Advocating for Another Patient Leader Hero

Lydia is a workhorse in the world of advocacy and rare disease. She puts other’s needs first and spreads herself thin. She is diligent in learning all facets of rare disease to ensure she is as affective as possible.  — Jessica

She is passionate and provokes positive changes.  — Anil

Lydia is fierce in her advocacy for all persons with rare diseases. She gives until she drops. Lydia helps individuals gain access to information, advocacy, medical care and self-care. Lydia inspired me to become an advocate myself. She sets such a fabulous example for so many. I hoe to see her run for office one day!  — Jeneva

Lydia is everything this reward winner should embody, from her passion for advocating for her her children to her huge heart and compassion for others effected not only with the same condition but beyond into all of the Rare Disease community. She is someone who gives her all to help those in need.  — Cassandra


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