Meet Steve, healthcare policy guru, Policy Director at the EveryLife Foundation for Rare Diseases, and Newborn Screening Advocate.
How long have you worked in the Rare Community?
I’ve spent 1 year focused solely on rare and 6 years in healthcare policy in which I was involved in rare issues.
What is your personal mission when it comes to rare?
I use what I learned while working on Capitol Hill to make Congress work for those who need it the most. My work benefits all rare disease patients, with a predominant focus domestically.
How did you become involved in the rare community?
I learned about rare diseases as Congressional health staffer through EveryLife Foundation’s Rare Disease Legislative Advocates Program. The EveryLife mission is important because policy changes have an enormous effect on drug development and access. Changing policy can change lives and our team empowers patients to be effective advocates.
How does EveryLife support advocates?
We provide advocacy training, facilitate meetings with lawmakers, and provide policy-related resources. People are often surprised by how easy advocacy is. After making that first call to a Member of Congress to taking that first meeting, the fear of advocacy often goes away and confidence is quickly built.
How can the rare community help the EveryLife Foundation fulfill its mission?
Share what we are doing with patients who want to become more engaged in advocacy.
We can do that! What community events do you have on tap?
September 11 – Rare Disease Congressional Caucus Briefing on importance of newborn screening in Senate’s Russel Building.
September 12 – Rare Disease legislative Advocates webinar on diagnostic themed legislation for Newborn Screening Awareness Month. (http://action.everylifefoundation.org/p/salsa/event/common/public/?event_KEY=11581)
December 4 – Rare Voice awards celebrating advocacy in Washington, DC.
Those sound like great opporutnities to get engaged with the work EveryLife is doing. We have to ask – what’s the best part of your job?
Seeing the results of helping patients breakdown the barriers of policy and effectively navigate Congress to be their own advocate.
What’s your hope for the future of the rare community?
That the policymakers will be better informed about the unique challenges of rare disease patients.
Don’t miss Steve discuss the importance of Newborn Screening at The Rare Fair on September 27, 2019!