#3- InfoRARE (May - June 2023)
ECOU Project - "Education in the community for the organization and follow-up with rare diseases patients". Launched in partnership with the Romania’s Prader Willi Association and Norway’s Frambu Rare Disease Resource Center, ECOU Project focuses on increasing prevention and reducing health inequalities for patients with rare diseases.
May 2. Meeting community assistants and health mediators. As part of the ECOU project, we met and addressed the issue of rare diseases and the effective ways to reduce inequalities for patients with diseases, with 33 community assistants and health mediators from Sălaj County.
May 25. EURORDIS Council of National Alliances (EMM2023). We attended the meeting in Stockholm / EMM2023 (EURORDIS Membership Meeting) and had discussions on the most important advocacy topics for rare diseases at the European level.
The event brought together more than 700 participants, and a Manifesto for the future inclusion of people with disabilities was adopted during the event. In preparation for next year's European Parliament elections, this document will provide candidates with guidance and information for building future political programmes.
June 10. Participation in the National Conference of Rare Diseases in Croatia. We participated (online) in the 7th National Conference of Rare Diseases in Croatia with the presentation State of the Art of Rare Diseases in Romania vs Europe. We had an extremely valuable sharing experience, and we were happy to represent ANBRaRo and EURORDIS at this event.
We shared information with our colleagues on the projects we are currently implementing through the EEA Program 2014-2021: the ECOU, MEDI.COM-RARE and METABO.MS - projects to solve some of the challenges of people affected by rare diseases in Romania.
June 16. ECOU Project - Cross-sector meeting within the ECOU Project - Community education for the organization and follow-up of patients with rare diseases. We have organized the 3rd meeting in Bucharest, have attended by more than 15 participants (hybrid) - with representatives of the authorities (Ministry of Health, Ministry of Labor/Authority for the Protection of the Rights of Persons with Disabilities), the academic environment (UMFCD – Genetics), patients, representatives of Expertise Centers, patient associations, and others.
The purpose of the meeting was the dialogue, the analysis of the needs of patients with rare diseases from various perspectives, the identification of patient associations and other supporters and providers of medical care, the mapping of accessible services for patients with rare diseases and efforts to initiate an intersectoral collaboration platform.
On June 28, the NORO Center celebrated 12 years! Happy Birthday!
On this anniversary, we have organized "Open Doors Day" (April 25 - June 28) and we had numerous guests who visited us and saw the activities in our Center.
June 9. Batten Disease Awareness Day. Every year, on June 9, people around the globe mark Batten Disease Day - to raise awareness and funds for this disease. Batten disease is a group of 13 known fatal genetic disorders that cause similar symptoms and affect the body's ability to get rid of cellular waste - lipids and proteins. Accumulation causes seizures, vision loss, problems with thinking and movement, and death. Batten disease is an inherited metabolic disorder, but there is currently no cure for it.
To mark this day, important buildings in Bucharest and in the country were specifically illuminated: Bistrița City Hall, Victoria Palace, National Opera, National Library, Fountain of Flowers 4th District, Fountains in the center of Bucharest.
III. UPCOMING EVENTS
- Organizing therapeutic education groups for patients - at NoRo center and online
- Organizing intersectoral meeting with patients, specialists and representatives of the authorities from 10 counties
- Meeting with members of the National Alliance for Rare Diseases