What departments does EveryLife Foundation for Rare Diseases have?

EveryLife Foundation for Rare Diseases has employees across 1 departments including Engineering.

What is the largest department at EveryLife Foundation for Rare Diseases?

The largest department at EveryLife Foundation for Rare Diseases is Engineering with 1 employees.

Where are EveryLife Foundation for Rare Diseases employees located globally?

EveryLife Foundation for Rare Diseases has employees across 2 continents and 5 countries including United Kingdom Of Great Britain And Northern Ireland, Switzerland, Austria, United States Of America, Canada.

How has EveryLife Foundation for Rare Diseases's team size changed over time?

EveryLife Foundation for Rare Diseases's team has grown from approximately 71 to 76 employees based on available data.

EveryLife Foundation for Rare Diseases Employee Directory

Public Policy OfficesDistrict of Columbia, United States51-200 Employees

The EveryLife Foundation for Rare Diseases is a nonprofit organization focused on shaping public policy to improve health outcomes for people with rare diseases. It pursues these goals through evidence-based policy work and science-driven policy and regulatory research, aiming to inform lawmakers and regulators. The foundation also mobilizes the rare disease community to advocate for their rights and needs and seeks to strengthen the community as a whole.

Based in Washington, DC, it serves patients, families, and advocates affected by rare diseases and collaborates with partners to advance patient-centered policy decisions. Recent activity includes participation in Rare Disease Week 2026 on Capitol Hill, illustrating ongoing engagement with policymakers and allied organizations.

EveryLife Foundation for Rare Diseases Global Highlights

North America
94

United States Of America
91
Canada
3

Europe
4

United Kingdom Of Great Britain And Northern Ireland
2
Switzerland
1
Austria
1

EveryLife Foundation for Rare Diseases's Leadership

S. V. F.
Vice President Of Advocacy
Mobile Phone
Email
S. F. R.
Senior Director Of Patient Programs
Mobile Phone
Email
S. S.
Director Of Development
Mobile Phone
Email
K. J.
State Advocacy Manager
Mobile Phone
Email
N. M.
Young Adult Rare Representative (yarr)
Mobile Phone
Email
A. S.
Young Adult Rare Representative (yarr)
Mobile Phone
Email
J. B.
Member, Board Of Directors
Mobile Phone
Email
S. L. S.
Member Board Of Directors
Mobile Phone
Email

EveryLife Foundation for Rare Diseases Employee Metrics

100%

50%

0%

2026

2025

Consultant
Community & Social Services
Entrepreneurship
Branding
Business
Other
Program & Project Management

Contact profiles from EveryLife Foundation for Rare Diseases

Name

Title

Contact Info

Location

Last Update

S. V. F.
Vice President Of Advocacy
Mobile Phone
Email
Jun 28, 2026
S. F. R.
Senior Director Of Patient Programs
Mobile Phone
Email
Jun 30, 2026
S. S.
Director Of Development
Mobile Phone
Email
Mar 24, 2026
K. J.
State Advocacy Manager
Mobile Phone
Email
Sep 14, 2023
N. M.
Young Adult Rare Representative (yarr)
Mobile Phone
Email
Jul 06, 2026
A. S.
Young Adult Rare Representative (yarr)
Mobile Phone
Email
Apr 16, 2026
J. B.
Member, Board Of Directors
Mobile Phone
Email
Jun 28, 2026
S. L. S.
Member Board Of Directors
Mobile Phone
Email
Apr 17, 2026
C. J.
Executive Administrator
Mobile Phone
Email
Jun 30, 2026
E. L.
Communications Intern
Mobile Phone
Email
SwitzerlandGeneve
Oct 17, 2024

Frequently Asked Questions

What is EveryLife Foundation for Rare Diseases known for?

EveryLife Foundation for Rare Diseases was founded in 2009 operates in the Public Policy Offices industry; you can contact the main corporate office by phone at

+1-415-884-****

. Explore EveryLife Foundation for Rare Diseases's company overview page for more information.

What is EveryLife Foundation for Rare Diseases's most common email format?

EveryLife Foundation for Rare Diseases employees' email format typically follows the pattern of . Trying to find reliable and up-to-date employee contact data? Find more EveryLife Foundation for Rare Diseases email formats with LeadIQ.

How many employees does EveryLife Foundation for Rare Diseases have currently?

EveryLife Foundation for Rare Diseases has approximately 80 employees as of July 2026. These team members are located across 2 continents, including North AmericaEurope.

Who are EveryLife Foundation for Rare Diseases's key employees and leadership?

As of July 2026, EveryLife Foundation for Rare Diseases's key employees include:

Vice President Of Advocacy: S. V. F.
Senior Director Of Patient Programs: S. F. R.
Director Of Development: S. S.
State Advocacy Manager: K. J.
Young Adult Rare Representative (yarr): N. M.

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EveryLife Foundation for Rare Diseases Employee Directory

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