22 February 2019 - 24 February 2019
tbc, Cluj Napoca, Romania
Hosted by The National Alliance for Rare Diseases Romania - ANBRaRo
Organizing a Hackathon in Cluj Napoca on "Connecting health services with social services"
Theme: "Care coordination for patients with rare diseases"
Participants: Medical specialists, IT specialists, social workers, therapists, patients, etc.).
The best solutions will be presented at the National Conference on 28 February in Bucharest.
Patients with rare diseases are spread nationwide in different regions, requiring centralized intervention. Currently, there are insufficient national services for patients with rare diseases, and the issue of rare diseases is complex and interdisciplinary: http://insp.gov.ro/sites/cnepss/wp-content/uploads/2016/01/ analysis-by-situation-2016.pdf
The medical and social services infrastructure is deficient and there is no communication between services, while over 50% of patients live in rural areas, isolated and without access to services.
We believe that we have a good IT infrastructure and human resources available to connect existing services virtually, improving patient circuitry and shortening waiting times for information, diagnosis and access to services.
• The National Alliance for Rare Diseases
• Prader Willi Association in Romania
• The Romanian Cancer Association
• FreshBlood HealthTech Community