NF2 BioSolutions UK & Europe

What NF2 BioSolutions UK & Europe does

Cure NF2 Foundation, formerly NF2 BioSolutions, is a US 501(c)(3) nonprofit public charity founded in July 2018 by Dr. Nicole Henwood following her son's diagnosis with NF2-related schwannomatosis. The organization is the first US nonprofit dedicated solely to funding NF2 gene therapy research, operating alongside a UK-registered arm (NF2 BioSolutions UK & Europe, based in Carmarthen) that extends its reach into the European rare disease ecosystem. It is 100% volunteer-run and patient- and family-led, with no paid staff, and has cumulatively raised and granted over $4 million to support 12 NF2 research projects targeting the root genetic cause of the disease through approaches including AAV9 gene therapy delivery vectors and CRISPR-Cas9 gene editing.

The foundation's core products center on three pillars: NF2 Gene Therapy Research (its flagship grant program funding cutting-edge translational work), the NF2 Biobank (a one-of-a-kind open-access resource providing NF2 tissue and cell samples to researchers worldwide), and Sponsored Research & Updates (multi-institution projects with transparent public reporting). Supporting community services include a Patient Stories platform, free educational webinars featuring NF2 experts, and a branded merchandise shop for grassroots fundraising. The NF2 Biobank is the most differentiated asset, enabling faster scientific discovery by removing the sample-access barrier that typically constrains rare-disease research.

The foundation's business model is purely donation-driven, with revenue generated through individual donations, community campaigns, workplace giving programs, school fundraising, and merchandise sales. All donations are voluntary, no fees are charged for services, and the GTM motion is community-led, relying on storytelling, ambassador outreach, social media engagement, and direct fundraising asks rather than institutional sales. Target audiences span NF2 patients and families (primary beneficiaries), researchers and clinicians (program participants and grantees), and donors and supporters (revenue source). Distribution is digital-first via the curenf2.org website, social channels, and a global ambassador network spanning the US, UK, Europe, Australia, and beyond.

Name

NF2 BioSolutions UK & Europe

Legal name

Cure NF2 Foundation

Website

https://nf2biosolutions.org

Company type

Private

Founded year

2018

Operating status

Operating

Headcount range

11–50 employees

Short description

Cure NF2 Foundation (formerly NF2 BioSolutions) is a 100% volunteer-run US 501(c)(3) nonprofit that funds NF2 gene therapy research, operates the open-access NF2 Biobank, and supports NF2 patients and families globally through its UK & Europe arm.

Ownership category

akta.pro rank

Product category

Rare Disease Gene Therapy Research

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211)

SIC

Services-Social Services (8300)

akta.pro primary industry

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

akta.pro secondary industries

Research & Science Grantmaking Foundations (BPAGAKAI), Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Gene therapy research
• Rare disease philanthropy
• Biomedical biobank services
• Patient advocacy programs
• Research grant funding

Headquarters

HQ city

Carmarthen

HQ country

United Kingdom

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Technology or R&D, Operations, Marketing or Sales, Infrastructure

Revenue model

1. Donations and Fundraising: The foundation relies entirely on donations from individuals, families, and supporters. Fundraising is conducted through social media campaigns, workplace giving programs, school campaigns, and direct asks. The model follows successful rare disease foundation playbooks.
2. Merchandise Sales: Sales of branded merchandise through the organization's online shop (Bonfire store) including NF2-themed items.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels9 records

Core offering

NF2 BioSolutions UK & Europe, the UK and European charitable presence of Cure NF2 Foundation, funds NF2 gene therapy research and supports research collaborations targeting the root genetic cause of NF2-related schwannomatosis. It operates an open-access tissue and cell biobank and provides patient and family education, advocacy, storytelling, webinars, and community support, with merchandise sales supporting fundraising.

Product overview

Cure NF2 Foundation (formerly NF2 BioSolutions) is a nonprofit organization operating as a unified portfolio of research programs and community services rather than a commercial product platform. The core offerings consist of NF2 Gene Therapy Research (the flagship initiative funding gene therapy strategies), the NF2 Biobank (open-access tissue/cell sample resource), and Sponsored Research & Updates (institution-spanning projects with transparent reporting). Supporting services include a Patient Stories Platform for community engagement, NF2 Webinars for education, and an NF2 Merchandise Shop for fundraising. The organization does not offer commercial software products.

Differentiator

Problem solved

Functional benefit

Products and services

• NF2 Gene Therapy Research Grant-funded initiative supporting gene therapy strategies that target the root genetic cause of NF2 tumors and advance laboratory research toward clinical trials; intended for researchers and partner institutions.
• NF2 Biobank Open-access repository of NF2 tissue and cell samples made available to researchers worldwide to support scientific discovery.
• Sponsored Research Research projects funded across multiple institutions, with project updates shared transparently with the NF2 community.

Quantifiable outcome

• Over $4 million raised/granted for NF2 research
• +3 more outcomes

Named customers2 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

One partnership is on record.

• Genetic Alliance UKminorStrategic or Co-development PartnerCure NF2 Foundation is a member of Genetic Alliance UK, an organization representing over 200 rare disease patient groups. This membership provides access to advocacy resources, networking opportunities with other rare disease organizations, and collaborative initiatives in the UK rare disease ecosystem.

Scale indicators6 records

Recent moves4 records

Expansion highlights5 records

Emerging players

• Schwannomatosis Association: Patient and research advocacy organization focused on schwannomatosis, the tumor condition central to NF2-related schwannomatosis. Comparable as a disease-focused nonprofit funding research and supporting patients within the same clinical space.
• Alex's Lemonade Stand Foundation: Childhood-cancer research nonprofit with a strong volunteer-led, family-founded fundraising model. Comparable as a patient/family-led foundation that funds translational research, has scaled nationally, and runs a successful grassroots + biobank/grantmaking model parallel to Cure NF2's approach.
• Acoustic Neuroma Association: Patient advocacy organization for individuals affected by acoustic neuromas (vestibular schwannomas), which are a hallmark tumor of NF2. Comparable as a community-led nonprofit raising awareness and support for a closely related clinical condition.

Direct peers

• NF Network: US patient-advocacy organization supporting individuals and families affected by neurofibromatosis, including NF2. Comparable as a patient-community-led nonprofit providing education, support, and research advocacy for the same disease family.
• Parent Project Muscular Dystrophy: Patient-led nonprofit that pioneered gene-therapy funding and advocacy for Duchenne muscular dystrophy. Closely comparable as a rare-disease, parent/family-led foundation whose playbook of funding gene-therapy research, building biobanks, and pushing IND-enabling studies Cure NF2 explicitly follows.
• Children's Tumor Foundation: Leading US nonprofit dedicated to neurofibromatosis (NF1, NF2, and schwannomatosis) research and patient support. Directly comparable as a disease-specific patient-advocacy foundation funding research, providing patient resources, and operating within the same NF family of conditions as Cure NF2 Foundation.

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella advocacy organization for the US rare-disease community, of which Cure NF2 Foundation is a Platinum member. Comparable as the broader ecosystem operator providing advocacy infrastructure, policy engagement, and member services that disease-specific foundations like Cure NF2 rely on.
• Cystic Fibrosis Foundation: Large, established rare-disease foundation funding CF research and drug development for decades. Comparable as a high-impact, disease-specific nonprofit that funds therapeutic research (including gene-therapy-adjacent approaches), operates a major donor and volunteer fundraising model, and shapes a research ecosystem.
• Genetic Alliance UK: UK alliance of over 200 rare-disease and genetic-disorder patient groups; Cure NF2 Foundation is a member. Comparable as the umbrella advocacy organization providing networking, policy, and infrastructure to small, disease-specific UK charities.

Regional players

• RARE Revolution Magazine / RARE Disease UK: UK-focused rare-disease advocacy and awareness platform with overlapping patient-community engagement in the UK. Comparable as a regional ecosystem player that supports UK-based disease-specific organizations with awareness and policy reach.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/nf2biosolutions
• YouTubeyoutube.com/c/INeedaCure
• Facebookfacebook.com/NF2BioSolutions
• LinkedInlinkedin.com/company/nf2-biosolutions-uk
• Instagraminstagram.com/nf2biosolutions

Compliance6 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about NF2 BioSolutions UK & Europe