narcolepsia.eu, a digital ecosystem for an invisible disease
How the design process revealed that an app doesn't solve a systems problem, and how that changed everything.
My son was diagnosed with type 1 narcolepsy.
He's 17. The path to diagnosis was long, years of misunderstanding, symptoms without a name, a healthcare system that had no tools to recognise what was happening.
That experience is the starting point for narcolepsia.eu. Not as therapy, but as a design problem I decided to solve systematically and rigorously.
Bruno Munari Method: creativity has a defined place, after the analysis.
The entire process follows the Bruno Munari Method (Das Coisas Nascem Coisas, 1981). The core principle: incomplete data collection generates solutions that seem right but solve the wrong problem.
Nothing moves to the creative phase until the problem components are completely mapped. This isn't a constraint, it's the methodological quality guarantee of the project.
30+ scientific studies. A clinical specialist. A very specific Portuguese reality.
The project is being developed in collaboration with Dr. Núria Madureira, Paediatric Medicine specialist at the CHUC Paediatric Hospital (Coimbra), sleep disorders expert and author of the main Portuguese publications on paediatric narcolepsy.
The Portuguese reality has specificities that international literature doesn't address: EMA-approved medications unavailable in Portugal, over 54% of patients waiting beyond guaranteed response times, and no active patient association in the country.
9.7 years
Average diagnostic delay in Europe
47/100k
Estimated prevalence in Europe
+50%
Symptom onset before age 18
91%
Knew no one with the same diagnosis
An app alone doesn't solve a 9.7-year diagnostic delay.
Version 1.0 of the project was an app for patients and families. A well-considered product, with solid research and a defined scope.
But deeper analysis of the data led to a conclusion that changed everything: the diagnostic delay isn't a patient problem. It's a systems problem. An app doesn't train GPs. Doesn't give teachers tools. Doesn't build a patient community. But a coordinated ecosystem can do all of that.
A GP with a 2-minute triage checklist can reduce years of diagnostic delay to weeks. A teacher observes the child 25 hours a week. The doctor sees them for 15 minutes a year. The ecosystem connects these actors who currently don't communicate with each other.
From app to ecosystem, 5 coordinated pieces.
Version 2.0 is a digital ecosystem with distinct pieces for distinct audiences, built in phases with a content-first strategy.
Content site
Phase 1Built first. Health literacy in Portuguese, SEO, all audiences. The field in European Portuguese on narcolepsy is essentially empty, on Google and in LLMs.
App for patients and families
Phase 1Symptom tracking, diary, medical reports, community, medication. Trauma-informed design.
Clinical tool
Phase 1Quick triage checklist for GPs and paediatricians. CHUC referral protocol.
Educational module
Phase 1Guide for teachers and school psychologists. Observation records integrable into medical reports.
PT community
Phase 2Portuguese-language forum for patients, families and professionals. First organised community in Portuguese.
7 entry points. Each with a different problem.
The personas were built across 3 versions, reconstructed entirely from the clinical data in Dr. Madureira's articles. Version 3.0 added two profiles absent from v1.0, the GP and the teacher, because they are the central actors in diagnostic delay.
Three pillars. If one fails, the others fail too.
Emotional safety
Trauma-informed design. Narcolepsy patients carry years of misunderstanding and social judgment. Technology can be re-traumatising if it doesn't follow principles of safety and empowerment. Radically simple when the user is tired, which is precisely when they need the product most.
Patient language, not medical language
NOT: 'log cataplexy episode' → YES: 'did your body suddenly go weak?' The product must be a permanent translator between what the patient feels and what the doctor needs to know.
Beyond monitoring
Recording → Understanding (patterns and triggers) → Agency (informed decisions). What transforms lives isn't having data, it's feeling in control.
Every technical decision has a justification.
narcolepsia.eu is an ongoing project you can follow at narcolepsia.eu