InfoRARE #3 - May - June 2023 (EN)

Submitted by admindmb on Fri, 21/07/2023 - 13:09
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#3- InfoRARE (May - June 2023)

 

I. FOCUS

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 23. Participation in the European Disability Parliament. Organized by the European Disability Forum in the European Parliament, we represented both the voice of Romanian patients through ANBRaRo, as well as the European patients as EURORDIS and campaigned for the needs of people with disabilities caused by rare diseases.

 

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.

 
May 29 - 31. ECOU Project – PWS Awareness Month. As part of the month dedicated to PWS (Prader Willi Syndrome) and of the ECOU project activities, "Management of behavior in Prader Willi Syndrome" conference took place. In parallel with the conference, the group of PWS patients was organized (in Timișoara). We had with us specialists such as Susanne Blichfeldt (Denmark), Norbert Hödebeck-Stuntebeck and Hubert Soyer (Germany), Maria Puiu, Adela Chirira and Violeta Stan, and we tried to give answers to the families present in Timișoara. The event was organized with the support of SEE 2014-2021, IPWSO (International Prader Willi Syndrome Organization), UMFT - Center for Genomic Medicine, Friends of Genetics, and many other supporters.
 
June 9. Integrated Care Forum in Cluj. We were present at the event "Patient approach through interdisciplinary collaboration and integrated management", during which we highlighted the need to have an adequate legislative framework, so that integrated care becomes a reality.

 

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 11. ERN ITHACA (European Reference Network for Rare Malformation Syndromes, Intellectual and Other Neurodevelopmental Disorders) Board meeting. We were present at the ERN ITHACA board meeting, where we presented our proposals to the group of ePAGs for the upcoming period.

 

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.

 
June 22. "Genetics in rare diseases" conference. Organized by the Academy of Medical Sciences, the event's main topic was genetics and its particular importance in rare diseases.

 

II. News

12 years of NORO

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.

 
21 May. Participation in a webinar dedicated to the psychological care in rare diseases. ANBRaRo and the Noro Center were represented in the meeting organized by Rare Diseases Bulgaria. Also, on the same day we took part in the (online) press conference organized at the Epilepsy School 2023 and the third meeting of the project "Together, the many for the rare"! A beautiful day!
 
May 24. Participation in "A Voice for the Future" - First National Conference of Patients with Lysosomal Diseases 2023. We had the pleasure of participating in the conference organized by the Romanian Foundation for Lysosomal Diseases (FRBL), during which the activities that carries out ANBRaRo, the collaboration with FRBL and the projects that are ongoing, especially the ECOU project - Education in the community for the organization and follow-up with rare diseases patients.
 
June 2. Myasthenia Gravis (MG) Awareness Day. Annually (June 2), people around the globe mark the need to raise awareness of MG and bring to the attention of the public MG and the burden that this disease brings to the patient and the family. Also, throughout the month of June, activities and information campaigns take place worldwide.
 
June 5. Survey - Barometer regarding newborn screening. The survey was launched in June, and for one month, it addresses patients and relatives. Your responses are expected to be submitted by July 9. Launched by EURORDIS, the results will help integrate and better understand the RD topic, and the solutions shall be communicated to the decision makers to adopt the necessary measures.

 

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.

 
June 14. Webinar "Care and monitoring of patients in isolated areas". They were joined by new doctors, authorities and patient representatives who explained how people with health problems in isolated areas can receive proper treatment and monitoring. Among the participants were Prof. Dr. Maria Puiu, medical genetics primary physician, pediatric primary physician, and teaching staff at UMF Timișoara, Lidia Onofrei, senior advisor in the Ministry of Health, Alexandra Dan, psychotherapist and representative of the NoRo Center, moderated by Dorica Dan, president of the National Alliance for Rare Diseases in Romania.

 

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