Living with a rare neuroimmune disease like NMOSD or MOGAD often means facing long gaps between medical visits — usually every six months, or a full year — while symptoms fluctuate day by day. Between appointments, small changes can easily be forgotten or hard to describe.
To close this gap, the Spanish NMOSD & MOGAD Association (Asociación Española NMO y MOGAD) has developed and is now actively distributing the “Registro de Síntomas NMO y MOGAD” App — a simple digital tool designed with and for patients.
What the App offers
Personal symptom tracking, day by day, so patients arrive at each appointment with an objective record instead of trying to remember months of symptoms.
Shareable reports that patients can send directly to their neurologist, improving the quality and efficiency of clinical consultations.
Voluntary contribution to research: patients can consent, through an informed consent form fully compliant with GDPR, to have their fully anonymised data used for statistical analysis and scientific research on NMOSD and MOGAD.
Progress so far
Distribution is being scaled across our patient community through the Association’s WhatsApp group, newsletter, and in coordination with reference hospitals such as Hospital Clínic and CEMCAT (Vall d’Hebron). Members receive step-by-step guidance and the informed consent form is managed digitally to make onboarding easy and transparent.
Why it matters
For a rare disease community scattered across the country, this App is more than a tracking tool: it strengthens the patient–doctor relationship, empowers self-management, and — for the first time in Spain — opens the door to a patient-generated data source that can support future research on NMOSD and MOGAD.
We invite other patient organisations across Europe to reach out and share experiences. Together, we can turn everyday patient data into better care and better research.
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About Asociación Española de NMO y MOGAD (Spanish Association: NMO & MOGAD)
Our mission is to provide each person affected by Neuromyelitis Optica and MOG antibody-associated disease, as well as their families, with the necessary support, treatment and information throughout their lives. We do this based on ethical commitment and responsibility, promoting opportunities that contribute to their well-being, quality of life and full integration into an inclusive and supportive society, with equal conditions for all.
Blog courtesy of Spanish Association: Asociación Española de NMO y MOGAD, a Patient Community Day Supporting Partner.