EveryLife Foundation for Rare Diseases

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https://everylifefoundation.org/

Last activity: 07.05.2026

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Categories: DevelopmentDiagnosticsHealthTechLegalTechMedtechNonprofitPublicScience

We are dedicated to empowering the rare disease patient community to advocate for impactful, science

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Followers

7.27K

Followers

7.05K

Website visits

20.6K /mo.

Mentions

Overview

Location

United States, District of Columbia, Washington

Employees

1-10

Phone

+1 415-884-0223

Founded date

2009

Mentions in press and media 16

Date	Title	Description
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Feb 10, 2026	Florida law models what genetic disease testing could be	To share your story, or find out how to get involved with CNBC Cures, email [email protected] Florida state Rep. Adam Anderson championed the Sunshine Genetics Act, the first state-backed genetic disease screening program in the nation. A...
Jan 6, 2025	The Intersection of Finance and Firearms: A SPAC Deal That Raises Eyebrows	In the world of finance, deals often resemble a high-stakes poker game. Players bet on potential, hoping to cash in on their investments. Recently, Omeed Malik’s special purpose acquisition company (SPAC), Colombier Acquisition Corp. II, ha...
Jan 6, 2025	The Shifting Landscape of American Investments: From Mayonnaise to Firearms	In the world of investments, trends shift like the wind. Recent developments highlight this dynamic landscape, where private equity firms and special purpose acquisition companies (SPACs) navigate diverse sectors. Two notable stories have e...
Jan 5, 2025	Omeed Malik’s SPAC Said to Near Deal With Gun Retailer GrabAGun	(Bloomberg) -- Omeed Malik’s special purpose acquisition company Colombier Acquisition Corp. II is close to an agreement to merge with online firearms retailer GrabAGun, a deal likely eschewed by many other Wall Street investors over ESG pr...
Apr 29, 2024	Newborn Screening Emergency: Urgent Call for Action to Identify 10,000+ Undiagnosed Rare Diseases	RARE PRS #12 The push for a transformative U.S.-India partnership in newborn screening (NBS) sets the stage for a seismic shift in tackling rare diseases, spotlighting the need to prepare for the digital AI revolution in global healthcare. ...
Feb 27, 2024	Hydrocephalus Association Plays Key Role in Rare Disease Week	Hydrocephalus Association at Rare Disease Week Hydrocephalus Association Advocates Rare Disease Week 2024 Hydrocephalus advocates unite with 800 fellow advocates from the Rare Disease community to champion critical life-saving legislation o...
Jun 27, 2023	Rare Disease Patient Advocates Gather in San Diego for a Week of Events to Connect, Learn, and Empower	Week in RARE events "We are creating an unparalleled opportunity for rare disease advocates to engage with each other, build relationships, and help them understand what they can do to change what it means to live with a rare disease d...
May 10, 2023	Three misconceptions about the accelerated drug approval pathway	On Friday, the Food and Drug Administration’s Cellular, Tissue and Gene Therapies Advisory Committee will meet to discuss the Biologics License Application for Sarepta Therapeutics’ gene therapy delandistrogene moxeparvovec for the treatmen...
Feb 22, 2022	Addressing Massive Health Inequities on Rare Disease Day	February 28 marks Rare Disease Day. Rare diseases affect an estimated 350 million people globally spanning more than 7,000 known conditions. Every year, approximately 200 new rare diseases are discovered because new disease-associated genet...
May 6, 2021	AI is ready to take on a massive healthcare challenge	Einat Metzer Contributor Share on Twitter Einat Metzer is CEO and co-founder of Emedgene, a leading precision medicine intelligence company. Which disease results in the highest total economic burden per annum? If you guessed diabetes, canc...
Mar 12, 2021	Congress Introduces The Speeding Therapy Access Today Act
Feb 25, 2021	Economic Burden of Rare Diseases in the U.S. Approached $1 Trillion in 2019, Surpassing Cost Estimates for Many Chronic Diseases	WASHINGTON--(BUSINESS WIRE)--Feb 25, 2021-- In a new study released today by the EveryLife Foundation for Rare Diseases, the estimated economic cost of 379 rare diseases in the United States totaled $966 billion in 2019, a figure that surpa...
Apr 10, 2017	Are pharma industry companies converting patients with orphan diseases into lobbyists?	“Obviously, we wanted to send as many patients to advocate on Capitol Hill as possible,” said Yale, the director of the International Pemphigus & Pemphigoid Foundation. Yale collected $7,500 in donations from a specialty pharmacy and a ...
	Are pharma industry companies converting patients with orphan diseases into lobbyists?	Wearing a blue T-shirt and worn jeans, Marc Yale stood near the welcome pole at the annual Rare Disease Legislative Advocates conference handing out money. Envelopes in his left hand held $750 checks to help patients with a rare disease cov...
	EveryLife Foundation and Global Genes Partner to Support Development of New and More Diverse Leaders in State-Based Rare Disease Patient Advocacy With RARE on the Road Leadership Tour	ALISO VIEJO, Calif.--(BUSINESS WIRE)--Mar 16, 2021-- Global Genes and the EveryLife Foundation for Rare Diseases announced that the fifth annual RARE on the Road, a Rare Disease Leadership Tour, will kick off on March 23, 2021, with a live,...

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FAQ about EveryLife Foundation for Rare Diseases

When was EveryLife Foundation for Rare Diseases founded?

EveryLife Foundation for Rare Diseases was founded in 2009.

What has the press written about EveryLife Foundation for Rare Diseases?

Parsers VC has collected 16 articles mentioning EveryLife Foundation for Rare Diseases, among them “Florida law models what genetic disease testing could be” (Feb 10, 2026) and “The Intersection of Finance and Firearms: A SPAC Deal That Raises Eyebrows” (Jan 6, 2025).

Is EveryLife Foundation for Rare Diseases still active?

Yes, EveryLife Foundation for Rare Diseases is active; its latest activity on Parsers VC dates from May 7, 2026.