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#4 - InfoRARE (July - August 2023)
I. FOCUS
July 27. Organizing of the "Newborn Screening" conference. In July, we continued to support the newborn screening campaign as part of the Share Experience 2023 series. The event was organized (online) on July 27 and the main topic was: the most effective methods of screening neonatal screening for the detection of serious congenital conditions and the need to improve neonatal screening in Romania. We had as key speakers: Prof. Dr. Cristina - Adela Iuga, MedFuture Cluj and UMF Iuliu Hațieganu Cluj - Napoca, Dr. Jolanta Sykut -Cegielska, associate professor at the Mother and Child Institute, Warsaw, Poland and Simona Belagambi, Italy, the vice president of EURORDIS. The event was moderated by Dorica Dan and organized by the National Alliance for Rare Diseases Romania and the Romanian Association of Rare Cancers with the support of Sanofi, Novartis, Bristol Myers Squibb, Janssen and UCB.
https://www.facebook.com/anbraromania/videos/242244372088491
August 4th. Organizing the ECOU - Oradea intersectoral meeting. As part of the Community Education for the Organization and Follow-up of Patients with Rare Diseases project - ECOU, we organized a new intersectoral meeting in which we had representatives of patient associations, relatives, specialists, experts from Expert Centers, representatives of local authorities, DSP DAS, DGASPC, the National Health Insurance, representatives of the authorities, hospital managers and health program coordinators. The debate organized in Oradea was extremely useful to find out what the needs really are in the field of rare diseases, from the perspective of each stakeholder.
August 24. Organizing the "Patient registers" conference. As part of the Share Experience Project, the event addressed the immediate need of patient registries. In rare diseases, patient registries can be used to establish the basic characteristics of conditions, how they are treated in clinics, and what outcomes patients perceive. Other uses include measuring the clinical effectiveness of treatments under real-world conditions, but also investigations into the quality of patient care. I was with them: Dr. Daniel Ciurea, WHO consultant at the European Regional Office, Dr. Ciprian Tomuleasa, Hematology Department, Oncological Institute "Prof. Dr. Ion Chiricuță" Cluj-Napoca and Alina Pătrăhău CEO and founder of the association ”Dăruiește Aripi”. Organized by the Romanian National Alliance for Rare Diseases and the Romanian Association of Rare Cancers, this was possible with the support of Sanofi, Novartis, Bristol Myers Squibb, Janssen and UCB.
https://www.facebook.com/anbraromania/videos/829843048646371
II. News
July 4th. We actively supported the campaign of the Charcot Marie Toth Romania Association - DizabilArt project. The article "Oh, it hurts" written by RUSTY Adriana Holtei in the magazine of artists with disabilities - DizabilArt. In the material, Adriana Holtei, the author of the books "Angels without wings" and "Budu, the whispers of the past", tells us about how difficult it is for a person with disabilities to reach a doctor and be treated in the state medical system in Romania. For more details, you can access the material below, respectively more about the author.
https://dizabilart.ro/2023/07/03/au-ma-doare/
https://www.facebook.com/rustyadriana.holtei
July 20. About rare diseases and the needs of people living with rare diseases. In July, Dorica Dan gave an interview on this topic. More details below.
July 21. Increasing the awareness of Dravet Syndrome. We continued to discuss Dravet Syndrome, a rare form of epilepsy, in the public space after June marked International Dravet Syndrome Awareness Day (June 23). For more details click below.
July 23. International Sjogren's Syndrome (SS) Awareness Day. Annually on July 23 we mark systemic autoimmune disease involving especially the salivary and lacrimal glands. You can find more details below.
July 24th. We supported the campaign organized by the Prof. Dr. I. Chiricuță Oncological Institute Cluj-Napoca in which free mammograms were performed. Thus, during July 24-28, in Jibou, Sălaj county, women between the ages of 50-69 could take part in this program.
July 26. Launch of the European resource center on accessibility - AccessibleEU. In July, the European Commission launched the AccessibleEU initiative, aimed at strengthening the coherence of accessibility policies in the European Union, facilitating access to information and good practices implemented in various member states. For more details, click below.
August 16. Farm trip. The children and young members from the Noro Center visited the farm where they explored and interacted with the animals: an experience for the soul!
III. UPCOMING EVENTS
- ShareExperience Webinar - “Communication with the decision makers”
- Patient Group – Parkinson, Noro Center, September 18-22
- Participation at the CEE Patient Engagement Annual Forum, Budapest, September 21-22
- Webinar – CML Day, September 20
- Participation at the XIII-a Genetics Conference (with international guests), SRGM, Timișoara, September 28-30
- Participation at the Specialized Panel – Neurology, ROHO 2023 Romanian Hospitals Convention
- Caring4Rare 2023 Conference, Serbia
- EAMDA Conference, Bucharest, September 30 -October 1
Thank you for all the support, and for more details related to the activity of the National Alliance for Rare Diseases Romania, please check our social media account.
