Undefined
January & February 2023
I. FOCUS
Every year, on February 28, we mark Rare Disease Day, on which occasion we organize and engage in a series of events to raise awareness of the challenges faced by patients with rare diseases and the need to ensure equity.
January 24 - social media pre-launch of the Rare Diseases Day Campaign/Ziua Bolilor Rare (ZBR) 2023
February 2 - launch of the ZBR campaign at the "Prim Plan Objectiv" TV show, Romanian National Television (TVR)
February 3, Zalău - The launch event of the #RareDiseasesDay2023 campaign - approx. 130 participants (98 people were physically present with us). Also, throughout the month of February, we ran an information and education campaign on rare diseases in schools and kindergartens.
February 8, Timișoara - "Victor Babeș" University of Medicine and Pharmacy in Timișoara, through the Timiș Regional Center for Medical Genetics, coordinated by Prof. Dr. Maria Puiu, organized and coordinated specific events and activities with partners throughout the month of February :
-questionnaires to assess the level of awareness of Rare Diseases among Medical students (SSMT)
-information and education campaign in the Schools of the municipality of Timișoara
-photo exhibition: People with rare diseases also smile - Iulius Mall Timișoara
February 6-9, Brussels - Participation in Brussels Rare Disease Week. Organized by Eurordis, Brussels Rare Disease Week represents a series of events lasting 4 days for supporting the cause of rare diseases and advocating for bringing changes at the level of the European Union.
-information and education campaign in the Schools of the municipality of Timișoara
-photo exhibition: People with rare diseases also smile - Iulius Mall Timișoara
February 6-9, Brussels - Participation in Brussels Rare Disease Week. Organized by Eurordis, Brussels Rare Disease Week represents a series of events lasting 4 days for supporting the cause of rare diseases and advocating for bringing changes at the level of the European Union.
February 23, online - Attending the Care for Rare Conference - As part of the Rare Disease Day campaign, we participated (online) in the Care for Rare Conference (Bahrain), following the invitation of Dr. Cristina Skrypnyk, Arabian Gulf University Bahrain.
February 24, Cluj-Napoca – Attending at the 16th "Rare Disease Day" Symposium, organized by UMF Cluj and the Romanian Society of Neurogastroenterology.
February 24 - February 28, Timișoara - Illumination of 5 representative buildings in the colors of Rare Disease Day/ZBR (Victor Babeș University of Medicine and Pharmacy - Building of the Faculty of Dental Medicine, Polytechnic University Timișoara, Louis Țurcanu Children's Emergency Clinical Hospital in Timișoara, Timișoara City Hall , Romanian National Opera from Timișoara).
February 27, Timișoara - National Conference on Rare Diseases (hybrid event), Senate Hall of Victor Babeș University of Medicine and Pharmacy
February 27, online – Attending the `Mulți Pentru Rari` event, organized by the Expertise Center for Rare Pediatric Neurological Diseases Obregia.
February 28, Bucharest - Participation (online) with presentations held in the conference organized by INSMC Bucharest, Robănescu Recovery Hospital, respectively physical presence at the event organized by UMF Carol Davila, at the Parliament Palace.
February 28, Bucharest - As part of the Rare Disease Day (ZBR) Campaign and the need for public awareness, between 18:00 and 24:00, the Communication Tower of the Special Telecommunications Service (STS), Arcul de Triumf and the "Carol Davila" University of Medicine and Pharmacy, were illuminated in blue, green, pink and purple - colors of the campaign.
March 1, 2023, Bucharest - Press Conference - Rare Disease Day/ZBR, Capitol Hotel. For a month, the campaign dedicated to ZBR brought together authorities, partners, supporters, volunteers, patients and their families, and on March 1 we ended the campaign with an exceptional event and an atmosphere in which challenges, blockages, solutions were debated and brought hope through patient stories, professional expertise and legislative developments.
II. NEWS
Patient Group meetings. In February, NORO Center hosted two groups of patients (Multiple Sclerosis, Gaucher Disease), ensuring (for one week) integrated specialized services - individualized therapies, group therapies, information and psychological / psychopedagogical, social counseling , medical consultations in pediatric psychiatry, neurology or genetics / pediatrics, nutrition counseling.
February 4, Cluj-Napoca - Attending and helding presentation at the event organized by the Together for Patrick Association (www.pentrupatrick.ro), the first edition of the Transylvanian Cystic Fibrosis Conference in Cluj-Napoca; conference organized both for the medical professionals involved in the diagnosis, treatment and monitoring of the disease, as well as for the parents, relatives of the patients affected by this disease.
February 6-9, Brussels - Meetings with Members of the European Parliament. ANBRaRo representatives had a series of official meetings with Mr. Alin Mituța, respectively Mr. Nicolae Ștefănuță, Members of the European Parliament, supporters of patients with rare diseases. During the meetings, topics such as the European Action Plan on rare diseases, the harmonization of the assessment of people with disabilities in Europe, the common digital space, the vulnerability of people with rare diseases and their families in terms of mental health, the European disability card, medicines were discussed orphans s.a.
February 21, Brussels - Participation in the EURORDIS Black Pearl Awards Gala, recognition event for those who have contributed in particular to promoting the cause of patients with rare diseases through information, research, innovation, advocacy and involvement.
February 22, Brussels - Attending the Round Table of Companies in Brussels organized by EURORDIS - as part of the European-wide advocacy efforts to create a unified framework that allows access to faster and better treatments.
III. UPCOMING EVENTS
III. UPCOMING EVENTS
Participation in the evaluation of the European Reference Network (ERN), Brussels - once every 5 years
March 24 - Organizing a workshop with international participation for the expansion of neonatal screening in Romania
March 24 - Organizing a workshop with international participation for the expansion of neonatal screening in Romania
March 27-31 - Exchange of experience with staff from the Frambu Center in Norway at the NoRo Center
March 29 - Organization of the Medi.Com-Rare workshop at UMF Timișoara, together with the partners from the Medi.Com-Rare project
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.