Cern Foundation

What Cern Foundation does

The CERN Foundation (Collaborative Ependymoma Research Network) is a non-profit patient advocacy and research organization founded in 2006 to improve care and outcomes for individuals affected by ependymoma, a rare tumor of the brain and spinal cord. It operates as a designated program of the National Brain Tumor Society (NBTS) following a September 2020 integration, with headquarters in Zionsville, Indiana and a small operational team (1-10 employees). The organization runs a portfolio of education, community, and research programs, including the Ependymoma Guide (third edition released June 2024), a Referral Network connecting patients to neuro-oncology specialists, and the annual Ependymoma Awareness Day established in 2012.

Its core programmatic surface consists of four pillars: (1) patient and caregiver education through published guides, blog series, video content (Ependymoma Essentials launched December 2021), and a monthly newsletter; (2) clinical trial facilitation at major research centers including NIH, Memorial Sloan Kettering, MD Anderson, St. Jude, Harvard Cancer Center, and University of Pittsburgh; (3) research funding via the CERN and Robert Connor Dawes Scientific Fellowship program, which has supported early-career researchers since 2018; and (4) advocacy, including an annual "Head to the Hill" event with NBTS. The foundation does not develop commercial technology products; its underlying "platform" is a curated network of research institutions, clinical sites, and patient communities spanning 20+ countries.

CERN is funded entirely through charitable donations and grants, with no commercial revenue model. Key funding partners include the Robert Connor Dawes Foundation (leading fellowship sponsor since 2018), individual donors, and downstream government grants (notably a $6M NIH U54 award and a $3M NCI R01 grant catalyzed by CERN seed funding). It serves three primary beneficiary segments: ependymoma patients and survivors, caregivers and families, and neuro-oncology medical professionals, with patients and caregivers as the primary audience.

Name

Cern Foundation

Legal name

CERN Foundation, Collaborative Ependymoma Research Network

Website

https://cern-foundation.org

Company type

Private

Founded year

2006

Operating status

Operating

Headcount range

1–10 employees

Short description

The CERN Foundation is a non-profit patient advocacy and research organization dedicated to improving care for people with ependymoma through patient education, clinical trial facilitation, fellowship funding, and global community programs, operating as a designated program of the National Brain Tumor Society.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy and Research

NAICS

Religious, Grantmaking, Civic, Professional, and Similar Organizations (813), Grantmaking and Giving Services (81321), Educational Support Services (61171)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Neuro-Oncology (HLAKAFAH), Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Rare disease advocacy
• Cancer research funding
• Patient education resources
• Clinical trial coordination
• Ependymoma community support

Headquarters

HQ city

Zionsville

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Charitable Donations: The foundation operates as a non-profit organization supported primarily through donations from individuals, families, and supporters affected by ependymoma. Donations fund research fellowships, clinical trials, patient education, and community support programs.

Distribution channels5 records

Marketing channels7 records

Core offering

The CERN Foundation operates as a nonprofit patient advocacy and research organization dedicated to ependymoma. It delivers free educational resources (notably the Ependymoma Guide), connects patients with neuro-oncologists through a referral network, sponsors multiple ependymoma-specific clinical trials, funds competitive scientific fellowships, and convenes an annual Ependymoma Awareness Day with global webinars and community events.

Product overview

The Cern Foundation (Collaborative Ependymoma Research Network) offers a patient-focused service ecosystem centered on education, research, and community support for ependymoma—a rare brain and spinal cord tumor. The core offerings include the Ependymoma Guide (a comprehensive educational resource in its third edition), the CERN Clinical Trials Program supporting multiple research trials, and the CERN and Robert Connor Dawes Scientific Fellowship funding early-career researchers. The Foundation operates community programs including the annual Ependymoma Awareness Day (established 2012), the Ependymoma Community Blog Series, Ependymoma Essentials video series, and the Inspiration Stories platform. Additional services include a Referral Network connecting patients with neuro-oncology specialists and a monthly CERN Newsletter keeping the community informed on research and events.

Differentiator

Problem solved

Functional benefit

Products and services

• Ependymoma Guide A comprehensive guide providing basic facts about ependymoma to increase education and awareness about the rare disease. Available in multiple editions, serving as a core educational resource for patients, caregivers, and advocates.
• CERN Clinical Trials Program A program supporting multiple ependymoma clinical trials including CERN 08-01 (pediatric), CERN 08-02 (adult), CERN 09-02, and 5-FU Trial, aimed at advancing treatment options for ependymoma patients.
• Referral Network A service connecting patients with neuro-oncologists who specialize in treating ependymoma, helping patients find expert medical care and CERN Research Centers across North America.
• CERN and Robert Connor Dawes Scientific Fellowship A prestigious two-year fellowship program supporting early career scientists focused on ependymoma research. Partnered with the Robert Connor Dawes Foundation to provide pediatric ependymoma research funding.
• Ependymoma Awareness Day An annual international awareness day established in 2012 to increase public recognition of ependymoma and express the urgent need to develop better-targeted treatments. Features virtual webinars, butterfly releases, and community events.
• Inspiration Stories Platform A platform connecting ependymoma patients and caregivers by allowing them to share their personal stories and experiences with the disease to provide support and awareness.
• CERN Newsletter A monthly newsletter keeping the ependymoma community informed with the latest news and research updates from the CERN Foundation.

Quantifiable outcome

• 250+ participants from 20+ countries in 2025 Ependymoma Awareness Day webinar
• +3 more outcomes

Named customers4 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eleven partnerships are on record, tiered core and major.

• Fred Hutchinson Cancer Research CentercoreStrategic or Co-development Partner · 24 February 2026Dr. Eric Holland at Fred Hutchinson Cancer Center leads a new multi-year CERN-funded international research project to better define spinal ependymoma at the molecular level. Dr. Holland previously received CERN funding in 2016 that led to a $6M NCI grant for ependymoma work in 2020.
• National Brain Tumor SocietycoreStrategic or Co-development Partner · 17 September 2020The CERN Foundation became a designated program of the National Brain Tumor Society in September 2020. This partnership combines CERN's focus on ependymoma with NBTS's broader brain tumor advocacy, research funding, and organizational infrastructure. The collaboration has enabled larger research initiatives including the DNA Damage Response (DDR) Consortium and expanded fellowship funding.
• St. Jude Children's Research HospitalcoreStrategic or Co-development PartnerMajor CERN research center and clinical trial site. Home to the Mack Lab led by Dr. Stephen Mack, which received the 2026 CERN and Robert Connor Dawes Scientific Fellowship. Conducted the 5-FU phase 0/1 clinical trial and contributes to DNA Damage Response Consortium research.
• NIH/NCI-CONNECTcoreStrategic or Co-development PartnerPartnership established July 2018 with NCI-CONNECT (Comprehensive Oncology Evaluating Rare CNS Tumors) to facilitate engagement with patients with rare CNS tumors including ependymoma. CERN works with NCI-CONNECT to disseminate clinical trial information and improve care approaches.
• MD Anderson Cancer CentercoreStrategic or Co-development PartnerMajor CERN research center and clinical trial site. Dr. Mark Gilbert, CERN Advisor and former CERN Foundation Medical Director, leads the Neuro-Oncology Branch at NCI. Multiple CERN clinical trials conducted including CERN 09-02.
• University of MichiganmajorStrategic or Co-development PartnerDr. Sriram Venneti's laboratory at University of Michigan received CERN seed grant funding in 2020 that was instrumental in securing a $3M NCI R01 grant for ependymoma research. Collaboration on RELA-C11orf95 fusion research.
• University Medical Center Hamburg-Eppendorf (Germany)majorStrategic or Co-development PartnerDr. Ulrich Schuller at University Medical Center Hamburg, Germany partners with Dr. Eric Holland on the international spinal ependymoma research project. International collaboration essential for collecting sufficient data on this rare disease.
• Hopp Children's Tumor Center Heidelberg (KiTZ)majorStrategic or Co-development PartnerDr. Kristian Pajtler's institution where CERN fellowship recipient Kendra Maass conducts research on extracellular vesicle pathways in ependymoma tumor cells. Dr. Pajtler is a CERN Spotlight researcher.
• Memorial Sloan Kettering Cancer CentercoreStrategic or Co-development PartnerCERN clinical trial site participating in the CERN 09-02 adult ependymoma clinical trial studying carboplatin and bevacizumab. One of four participating CERN sites.
• Harvard Cancer CentercoreStrategic or Co-development PartnerCERN clinical trial site participating in the CERN 09-02 adult ependymoma clinical trial studying carboplatin and bevacizumab. One of four participating CERN sites.
• University of Pittsburgh Cancer InstitutecoreStrategic or Co-development PartnerCERN clinical trial site participating in the CERN 09-02 adult ependymoma clinical trial studying carboplatin and bevacizumab. One of four participating CERN sites.

Scale indicators6 records

Recent moves7 records

Expansion highlights5 records

Broad incumbents

• St. Baldrick's Foundation: Major pediatric cancer research funder, including significant CNS tumor work. Overlaps with CERN on pediatric brain tumor research funding and community fundraising model.
• Alex's Lemonade Stand Foundation: A larger pediatric cancer research funder with a similarly competitive grantmaking model and family-driven origin story. Comparable in operating approach though broader in cancer type scope.

Direct peers

• Rally Foundation for Childhood Cancer Research: A pediatric cancer nonprofit that funds research through competitive grants and supports families. Similar seed-grant-driven research funding model and young-patient community focus.
• Chordoma Foundation: A nonprofit dedicated to a single rare cancer (chordoma) that combines research funding, patient services, and clinician education. Operates on a similar rare-disease-focused advocacy/research model that CERN follows for ependymoma.
• National Brain Tumor Society: CERN's parent organization and the most direct comparator: a US nonprofit that funds brain tumor research, advocates for patients, and convenes the community. CERN operates as a designated program within NBTS, making it the closest structural and operational peer.
• Children's Tumor Foundation: Funds research and supports patients with neurofibromatosis, a rare neurological condition. Similar patient-research-advocacy model targeting a specific rare tumor/cancer community.
• Pediatric Brain Tumor Foundation: The largest US nonprofit focused on pediatric brain tumors, funding research and providing family support. Comparable to CERN given overlapping pediatric CNS tumor focus, similar research-grantmaking model, and family support programs.

Peers

• Musella Foundation for Brain Tumor Research:

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/CERNFoundation
• LinkedInlinkedin.com/company/cern-foundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Cern Foundation