Become a member of Community Congress!



Thank you so much for your interest in the EveryLife Foundation’s Community Congress, a membership-based program dedicated to bringing patient organizations, industry leaders, and other rare disease organizations together. Members will learn about the Foundation’s scientific and policy goals, and provide valuable insight on prioritizing future initiatives. In addition, members will participate in working groups, co-chaired by an individual from industry and from the patient community.

Current planned working groups include:

• Public Policy
• FDA Regulatory Science
• Newborn Screening

Individual working groups will identify specific topics or issues they wish to prioritize and may take action by writing white papers, holding briefings, running workshops or other actions to effect change.

Members of the Community Congress Working Groups will be expected to be active participants. This entails helping to achieve policy goals by identifying critical and/or unmet policy issues, as well as areas where groups can make tangible and achievable policy impact. The Foundation will coordinate working group efforts and logistics to ensure that goals are being met.
Working groups will convene via conference call and/or webinar 2-3 times/year in addition to an annual, in-person meeting in Washington D.C., for a time commitment averaging 1-2 hours/month. Members will be expected to share policy-relevant information and collaborate with other members and/or working groups as needed.

Working Group Preference

WG_Newborn Screening - State Toolkits
WG_FDA Regulatory Science
WG_Public Policy - Expanded Access

Payment may be remitted to the EveryLife Foundation, 77 Digital Drive, Suite 210, Novato, CA 94949. Membership questions may be emailed to