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Global Genes
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Global Genes

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http://globalgenes.org/
Last activity: 07.05.2026
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Global Genes is a leading rare disease advocacy organization with global reach to the worldwide rare community of patients, caregivers, advocates and clinical partners. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™.

Global Genes'​ mission is to eliminate the challenges of rare disease through public and physician education, building community through social media and supporting research initiatives to find treatments and cures for rare diseases.

Rare diseases affect 1 in 10 Americans, 30 million people in the United States, and 400 million people globally. Over 7,000 distinct rare diseases exist and approximately 80 percent are caused by faulty genes. The National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases one of the most deadly and debilitating for children worldwide.

It is estimated that 95% of all rare diseases do not have a single FDA approved drug treatment, and there are currently less than 400 treatments approved by the FDA for the nearly 7000 rare diseases which have been identified.
Likes
113.93K
Followers
8.79K
Website visits
43.7K /mo.
Mentions
36

Overview

Location
Canada, Ontario, Toronto
Employees
11-50
Phone
+1 949-248-7273
Founded date
2009

Mentions in press and media 36

DateTitleDescription
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Apr 29, 2026Insilico's Rentosertib Inhalation Solution Receives IND Clearance for the World's First AI-Driven Candidate to Enter Direct-to-Lung Clinical StudyFollowing positive Phase IIa results for oral Rentosertib in GENESIS-IPF with good tolerability, a favorable PK profile, and dose-dependent efficacy improvements, the inhalation solution has received IND clearance from the CDE. The inhalati...
Jan 8, 2026CNBC launches CNBC Cures to help 30 million Americans with rare diseasesIf you’d like to share your story, or receive more information, email us: [email protected] CNBC Cures aims to help raise awareness of rare diseases and improve patient outcomes for people living with them. Led by “Squawk Box” anc...
Sep 5, 2024RARE Navigator Pilot Program Aims to Eliminate Critical Gaps in Support for Patients and Families Newly Diagnosed with a Rare DiseaseGlobal Genes The rare disease patient advocacy organization Global Genes, has launched a pilot program with Corewell Health Helen DeVos Children's Hospital (HDVCH) in Grand Rapids, Mich., to address gaps in support faced by newly diagnosed ...
Aug 22, 2024Global Genes' Annual Week in RARE Event Heading to Kansas CityGlobal Genes Global Genes is taking Week In RARE on the road to Kansas City, after having hosted this annual event in California for over 12 years. Moving the location annually will help make the event more accessible and equitable to the g...
Jul 17, 2024Global Genes and STXBP1 Foundation Enter Partnership to Use RARE-X Research and Data Collection Platform for Natural History StudyGlobal Genes Global Genes and STXBP1 Foundation are working with Children's Hospital of Philadelphia on a multi-site natural history study, the STARR study, to use the RARE-X research and data collection platform to collect patient-reported...
Jun 13, 2024Global Gene's RARE-X and Sleep Consortium Launch Sleep Data Collection Initiative to Accelerate Development of TherapiesGlobal Genes The Sleep Data Collection Initiative, the first consortium on the RARE-X platform for the collection and sharing of patient-owned data, brings together patient advocacy organizations, researchers, and drug developers looking to...
Mar 14, 2024Rare Disease Advocates Learn to Accelerate Therapeutic Development at 9th RARE Drug Development SymposiumRARE Drug Development Symposium The RARE Drug Development Symposium, hosted by Global Genes and the Orphan Disease Center of the University of Pennsylvania, equips advocates with the knowledge, skills and connections they need to advance th...
Feb 28, 2024Global Genes Heads to Washington D.C. for Rare Disease Day EventsGlobal Genes Global Genes CEO Charlene Son Rigby to participate in panel discussion at White House Forum ALISO VIEJO, Calif., Feb. 28, 2024 /PRNewswire-PRWeb/ -- Charlene Son Rigby, CEO of the rare disease patient advocacy organization Glob...
Jul 22, 2023Insilico Medicine Nominates Preclinical Candidate of Inhalation Solution for ISM001-055, the First Generative AI IPF DrugInsilico Medicine merges nebulizer device with AI-driven drug discovery; Potential advantages for the inhalation solution include a smaller effective dose, larger safety window and reduced side effects; As demonstrated in preclinical studie...
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FAQ about Global Genes

When was Global Genes founded?

Global Genes was founded in 2009.

What has the press written about Global Genes?

Parsers VC has collected 36 articles mentioning Global Genes, among them “Insilico's Rentosertib Inhalation Solution Receives IND Clearance for the World's First AI-Driven Candidate to Enter Direct-to-Lung Clinical Study” (Apr 29, 2026) and “CNBC launches CNBC Cures to help 30 million Americans with rare diseases” (Jan 8, 2026).

Is Global Genes still active?

Yes, Global Genes is active; its latest activity on Parsers VC dates from May 7, 2026.