Insights

Policy Allianz Opportunity to partner with a policy-focused foundation that drives evidence-based regulatory research and advocacy; potential sales angle includes offering policy analytics, stakeholder engagement tools, and fundraising/event platforms to support Rare Disease Week and RDLA initiatives.

Community Engagement Strong patient and advocate network across 49 states plus DC and Puerto Rico; potential for collaboration in patient-facing communications, education campaigns, and CRM-driven engagement solutions to streamline advocacy outreach and volunteer mobilization.

Tech Stack Fit Existing use of HubSpot, Shopify, and analytics tools suggests openness to integrated marketing, fundraising, and e-commerce solutions; opportunity to upsell CRM automation, campaign analytics, and event management integrations tailored to rare disease initiatives.

Public Visibility Active media presence and frequent partnerships (e.g., with Parent Project Muscular Dystrophy) indicate opportunities for joint awareness campaigns, grant management software, and strategic communications platforms to amplify policy wins.

Funding Scale Reported revenue range aligns with large philanthropicScope but needs for scalable operation tools; potential upsell of enterprise fundraising platforms, grant management, and financial reporting solutions to support large donor programs and regulatory research budgets.

EveryLife Foundation for Rare Diseases Tech Stack

EveryLife Foundation for Rare Diseases uses 8 technology products and services including HubSpot Analytics, RSS, Shopify, and more. Explore EveryLife Foundation for Rare Diseases's tech stack below.

  • HubSpot Analytics
    Analytics
  • RSS
    Content Management System
  • Shopify
    E-commerce
  • Lightbox
    Javascript Libraries
  • Moment.js
    Javascript Libraries
  • HubSpot
    Marketing Automation
  • Adobe Creative Suite
    Visualisation Software
  • The Events Calendar
    Web Platform Extensions

Media & News

EveryLife Foundation for Rare Diseases's Email Address Formats

EveryLife Foundation for Rare Diseases uses at least 2 format(s):
EveryLife Foundation for Rare Diseases Email FormatsExamplePercentage
FLast@everylifefoundation.orgJDoe@everylifefoundation.org
90%
Last@everylifefoundation.orgDoe@everylifefoundation.org
6%
FMiddleLast@everylifefoundation.orgJMichaelDoe@everylifefoundation.org
2%
FirLast@everylifefoundation.orgJohDoe@everylifefoundation.org
2%
First@rare.usJohn@rare.us
100%

Frequently Asked Questions

What is EveryLife Foundation for Rare Diseases's phone number?

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You can contact EveryLife Foundation for Rare Diseases's main corporate office by phone at . For more prospecting data, LeadIQ has access to up-to-date and accurate contact information within our platform. Find, capture, and sync contact data to your CRM and sales tools in one click.

What is EveryLife Foundation for Rare Diseases's official website and social media links?

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EveryLife Foundation for Rare Diseases's official website is everylifefoundation.org and has social profiles on LinkedIn.

How much revenue does EveryLife Foundation for Rare Diseases generate?

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As of July 2026, EveryLife Foundation for Rare Diseases's annual revenue is estimated to be $1B - $10B.

What is EveryLife Foundation for Rare Diseases's NAICS code?

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EveryLife Foundation for Rare Diseases's NAICS code is 921 - Executive, Legislative, and Other General Government Support.

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

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As of July 2026, EveryLife Foundation for Rare Diseases has approximately 80 employees across 2 continents, including North AmericaEurope. Key team members include Vice President Of Advocacy: S. V. F.Senior Director Of Patient Programs: S. F. R.Director Of Development: S. S.. Explore EveryLife Foundation for Rare Diseases's employee directory with LeadIQ.

What industry does EveryLife Foundation for Rare Diseases belong to?

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EveryLife Foundation for Rare Diseases operates in the Public Policy Offices industry.

What technology does EveryLife Foundation for Rare Diseases use?

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EveryLife Foundation for Rare Diseases's tech stack includes HubSpot AnalyticsRSSShopifyLightboxMoment.jsHubSpotAdobe Creative SuiteThe Events Calendar.

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

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EveryLife Foundation for Rare Diseases's email format typically follows the pattern of FLast@everylifefoundation.org. Find more EveryLife Foundation for Rare Diseases email formats with LeadIQ.

When was EveryLife Foundation for Rare Diseases founded?

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EveryLife Foundation for Rare Diseases was founded in 2009.
EveryLife Foundation for Rare Diseases logo

EveryLife Foundation for Rare Diseases

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.

Section iconCompany Overview

Phone number
NAICS Code
921 - Executive, Legislative, and Other General Government Support
Founded
2009
Employees
51-200

Section iconFunding & Financials

  • $1B - $10B

    EveryLife Foundation for Rare Diseases's revenue is estimated to be in the range of $1B - $10B

Section iconFunding & Financials

  • $1B - $10B

    EveryLife Foundation for Rare Diseases's revenue is estimated to be in the range of $1B - $10B

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