Rare Disease Day 2010 Romania
In Romania, the Romanian National Alliance for Rare Diseases completed the largest Rare Disease Day commemoration yet, since we started celebrating the event in 2008.
The newly formed National Committee on Rare Diseases, made up of patient organizations and specialists has been hard at work planning events throughout the country and working on the creation of 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 for patients.
This year events were held in cities across the country including: Bucharest, Timisoara, Cluj-Napoca, Iasi, Craiova, Zalau, Targu Mures, Slobozia, and Oradea.
The goal of 2010 was to have the National Plan for Rare Diseases included in the National Strategy for Health by the Romanian Ministry of Health. To reach this goal, we 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.
Please visit the following blogs for more information on actions in Romania:
http://ziuabolilorrare.wordpress.com
View all events in ROMANIA
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National Alliance
www.apwromania.ro
The goal of our alliance is to increase the awareness of the community on rare diseases through consensus building between different stakeholders involved in this field (patients, professionals, social workers, etc).