Jessica is the parent of a child with a bleeding disorder and has been been active in the bleeding disorders community for more than 20 years. She has volunteered with several local and national organizations and has spoken at programs across the country. In 2007, Jessica formed BDAN (Bleeding Disorders Advocacy Network) to develop and provide educational resources and programming, and also serves as the Coalition Coordinator for the New York State Bleeding Disorders Coalition. 

Bob has Hemophilia A and since 1991 has been active in the bleeding disorders community. Bob currently volunteers as the Public Policy Director for the New York State Bleeding Disorders Coalition (since 2009) and on the Steering Committee of Medicaid Matters New York, a coalition of NYS Medicaid stakeholders. In 2021 Bob was recognized by the Every Life Foundation as the State Advocacy Patient Advocate of the year, and in 2025 he received a NORD Rare Impact Community Champion award for advocacy. Bob previously served on the NYS Rare Disease Work Group, and has been selected as a member of the new NYS Rare Disease Advisory Council. He can often be seen wandering the halls of government in Albany with his trusty sidekick Bernie.

Kristen has lived with four rare diseases since early childhood; Gastroparesis, Thoracic Outlet Syndrome, Charcot Marie Tooth disease, and Postural Orthostatic Tachycardia Syndrome. (1 in 20 people or more with a rare disease may have multiple conditions.) In spite of that Kristen has long been an advocate for people with rare diseases and is helping to lead the effort in NY to create a Rare Disease Advisory Council. Kristen believes we can provide better care for people who live with rare diseases, especially in the areas of early diagnosis and better tertiary care for the symptoms of rare diseases, which can significantly affect a person's quality of life, physical health, and their mental health.