A roadmap for strengthening Nordic collaboration, awareness, care, research and equitable access for people living with Neurofibromatosis Type 1.
Across Denmark, Norway and Sweden, people living with NF1 are supported by strong healthcare systems and committed professionals. Yet expertise, data, patient experience and opportunities for innovation remain fragmented across institutions and national borders.
Nordic Fireflies is an independent, nonprofit collaboration platform connecting patient organisations, clinicians, researchers, policymakers and responsible partners around shared priorities and concrete action. It builds on the first Nordic Fireflies Collaboration Workshop, held in Denmark on 17–18 March 2026, where representatives from Denmark, Norway and Sweden met with clinicians and external stakeholders to define a shared direction for Nordic collaboration.
The first Nordic Fireflies workshop identified three closely connected barriers to living well with NF1: access to care and treatment, limited awareness, and lack of coordination. These challenges cross national borders and require shared Nordic action.
Access to specialist expertise, coordinated care, diagnostics, tumour surveillance, clinical trials and approved treatments varies across countries and regions. Reimbursement, health technology assessment decisions, early access programmes and implementation of evidence-based guidance can create additional inequalities.
NF1 remains poorly understood outside specialist environments. Limited awareness among healthcare professionals, policymakers and the public contributes to delayed diagnosis, stigma, insufficient recognition of disease burden and low prioritisation.
Care is often fragmented across specialties, sectors and life stages. Transition from paediatric to adult services can be difficult, and patients and families frequently become the coordinators of their own healthcare, educational and social support.
Within five years, Nordic Fireflies aims to help establish the Nordic region as an international model for collaboration in NF1—where knowledge moves faster, patients are meaningfully involved, research is easier to initiate, and access to care and innovation is more equitable.
Proposed mission: Nordic Fireflies strengthens Nordic collaboration to improve awareness, clinical care, research and equitable access to treatment for people living with NF1.
Priorities are shaped with people living with NF1 and their families—not solely on their behalf.
Funding relationships are transparent and do not determine scientific or policy positions.
The platform strengthens existing organisations and institutions rather than competing with them.
Activities are grounded in credible data, expert knowledge and responsible evaluation.
Geography, age and socioeconomic circumstances should not determine access to expertise or opportunity.
Every working group and partnership should lead to defined outputs, ownership and timelines.
Nordic Fireflies is not intended to replace national organisations or become another general discussion forum. Its purpose is to connect existing expertise, identify shared priorities, secure resources and deliver projects that improve access and awareness across the Nordic region.
Nordic expert networks, knowledge exchange, shared care pathways, education and cross-border learning.
Patient-informed research priorities, meaningful trial endpoints, multicentre collaboration, burden-of-disease evidence and data initiatives.
Evidence generation and coordinated advocacy for equitable access to specialist care, diagnostics, approved treatments, early access programmes and clinical trials.
Structured collaboration with national patient organisations so that patient perspectives inform research, healthcare and policy—without creating a separate patient community.
The first 12–18 months should convert the March 2026 workshop into a small number of visible and useful deliverables. The initial focus is to establish the network, map the Nordic landscape and create the evidence and relationships needed for longer-term change.
| Priority | Purpose | First output | Suggested timing |
|---|---|---|---|
| Nordic NF1 landscape and stakeholder mapping | Map clinical expertise, patient organisations, research activity, decision pathways, funding opportunities and systemic gaps. | Nordic landscape report and stakeholder directory. | Months 1–8 |
| Formal Nordic clinical and patient-organisation network | Establish a credible structure for collaboration between patient organisations, clinicians and researchers. | Network charter, named country contacts and annual collaboration plan. | Months 1–6 |
| Shared patient and research priorities | Identify what matters most to children, adults and families and translate this into research questions and meaningful endpoints. | Nordic priorities survey and co-creation workshop. | Months 4–10 |
| State of NF1 Care and Access | Document differences in specialist care, diagnostics, surveillance, approved treatments, reimbursement and clinical trial access. | State of NF1 Care in the Nordics report. | Months 6–12 |
| Nordic clinical-trial readiness | Describe the Nordic patient population, sites, infrastructure and partnership potential for NF1 studies. | Trial-readiness brief for researchers, foundations and responsible industry partners. | Months 8–15 |
| Awareness and education plan | Define priority audiences and opportunities for professional education, earlier diagnosis and public awareness. | Nordic awareness and education roadmap. | Months 10–18 |
The organisation should grow in proportion to its proven value. The roadmap combines the founding workshop priorities with a realistic sequence: establish trust and evidence first, then expand collaboration, trials, education and policy impact.
Legal setup, Nordic network charter, stakeholder and funding mapping, patient priorities and the first State of NF1 Care baseline.
Clinical network, patient-organisation forum, education activities, burden-of-disease work and one jointly funded project.
Annual Nordic forum, multicountry research, trial-readiness partnerships and stronger access and awareness advocacy.
Shared clinical resources, data partnerships, sustainable programme funding and broader Nordic participation as partnerships develop.
A recognised Nordic entry point for NF1 expertise, patient-informed research, clinical trials, education and equitable treatment access.
A nonprofit association can host the platform while allowing it to receive grants and sponsorships, employ staff and enter formal partnerships. Detailed rules on composition, elections and terms should be defined in the bylaws rather than in this Blueprint.
Nordic Fireflies should avoid dependence on a single funder or sector. Core funding and project funding should be developed in parallel.
Funding for mapping, research collaboration, patient engagement and organisational capacity.
Cross-border cooperation, rare disease, health innovation and civil society programmes.
Clearly defined, transparent and non-exclusive support governed by an ethics policy.
Private philanthropy, pro bono expertise and mission-aligned organisational partnerships.
The platform should distinguish outputs from outcomes. Meetings and reports matter only when they improve collaboration, knowledge, care, access or patient influence.
Nordic institutions and patient organisations engaged; shared clinical resources and education initiatives produced; burden-of-disease evidence generated; cross-border research and trials initiated; research funding secured; patients involved in project design; evidence used in access and policy discussions; and documented improvements in awareness, care pathways, trial opportunities or availability of EMA-approved treatments.
Nordic Fireflies invites patients, families, clinicians, researchers, patient organisations, policymakers, foundations and responsible partners to help build a more connected and ambitious future for people living with NF1.