Here in Romania, the Romanian National Alliance for Rare Diseases is preparing for the largest Rare Disease Day commemoration yet, since we started with the event in 2008.

The newly formed National Committee on Rare Diseases, made up of patient organizations and specialists as been hard at work planning events throughout the country and working on the National Plan for Rare Diseases. The National Plan includes new personalized services for patients, support for research projects, creating a network of Centers of Reference, and increased access to orphan drugs.

This year events will be held in cities across the country including: Bucharest, Timisoara, Cluj-Napoca, Iasi, Craiova, Zalau, Targu Mures, Slobozia, and Oradea.

The goal of this year is to have the National Plan for Rare Diseases included in the National Strategy for Health by the Romanian Ministry of Health. In reaching this goal, we aim to spread awareness about the situations of rare disease patients to groups ranging from school children to specialist medical professionals.

We wish everyone around the world success in their events this year and hope that Rare Disease Day will bring us closer to the goal of better care for patients with rare diseases.