#5 - September & October 2023
I. FOCUS
September 13. We organized the "Communication with decision makers" Conference - as this is a key topic for supporting patients with complex diseases, such as rare diseases and rare cancers. This permanent link can lead to mobilizing people around a common cause and creating support networks for patients with rare diseases and rare cancers. We had as guests: Sorin Gradinaru, vice-president of the Copilul Meu Inima Mea Association and member of the COPAC CD, Ligia Marincaș, director of the Sălaj Public Health Directorate and Prof. Dr. Ioana Streață from the University of Medicine and Pharmacy Craiova. 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.
The conference is part of the ShareExperience 2023 project.
https://www.facebook.com/watch/live/?ref=watch_permalink&v=6659764877446601
September 21. As part of the joint initiative (memorandum) of DMD Care Association and the National Alliance for Rare Diseases Romania, we addressed to the Government of Romania, the Ministry of Health and the National Health Insurance House to ensure the access to quality medical assistance for all patients with rare diseases, including those with Duchenne Muscular Dystrophy. Thus, the Ministry of Health has informed us that there is no legislation that prohibits the treatment of patients over 18 years old in pediatric health facilities or the treatment of patients under 18 years in adult health facilities. This matter is in compliance to Order no. 914/2006, which stipulates the need to ensure separate functional circuits for children and adults in medical units so that the respective hospitals can obtain the sanitary operating authorization. This rule aims to provide appropriate medical care adapted to the specific needs of each category of patients, both in pediatric and adult hospitals.
This clarification is an important step towards ensuring better access to treatment for patients with rare diseases, including those with Duchenne Muscular Dystrophy, who will continue to have access to both types of medical facilities, giving them the choice of better form of medical care for their specific needs, thus contributing to improving the quality of their lives and reducing the risk of serious complications that may occur in the absence of a real process of transition from pediatric care to adult care.
We are actively involved in ensuring the rights of patients with rare diseases and improving the health system in Romania.
September 22. We participated in the second edition of the CEE Patient Engagement Forum (Budapest) - common topics of interest and exchange of experience with our CEE partners.
October 2. We organized "Comprehensive services for patients" event - as part of the topic & need to provide integrated care to patients with rare diseases. According to the WHO, this includes: providing, managing and organizing of specialized care services with the aim of establishing, based on a diagnosis, the treatment, care, recovery / rehabilitation and promotion of the health status of patients.
We had as guests: Ramona Mocutiu, NoRo Center - Prader Willi Association from Romania, Veronica Popa, Andreas-Rareș Association and Florina Stoica, Expertise Center for Rare Eye Diseases. The event was moderated by Dorica Dan. Organized by the Romanian National Alliance for Rare Diseases and the Romanian Association of Rare Cancers, the event was possible with the support of Sanofi, Novartis, Bristol Myers Squibb, Janssen and UCB.
The conference is part of the ShareExperience 2023 project.
https://www.facebook.com/watch/live/?ref=watch_permalink&v=680817914012907
October 3. Participation in the event "Integrating a humanitarian response to the refugee crisis in Ukraine, including for persons with disabilities" - round table, organized by the Office of the World Health Organization in the Republic of Moldova in cooperation with the Office of the United Nations High Commissioner for Human Rights (OHCHR ), the United Nations Children's Fund (UNICEF), the United Nations Entity for Gender Equality and the Empowerment of Women (UN Women) and the United Nations Population Fund (UNFPA).
October 5. We attended at the "Educational approaches and learning experiences about rare diseases in health professions / Digital transformation in education" session (Iasi), following the invitation of the working group AMSE - The Association for Medical Schools in Europe and UMF Iasi.
October 11. Participation in Screen4Care Workshop, respectively Eurordis Round Table of Companies, the 34th edition of the ERTC (Barcelona). We discussed about newborn screening and the importance of early diagnosis for the rare disease community. We listened to testimonials from patients with a major impact on their families, the challenges they faced and are facing, we reviewed and analyzed the situation in various European countries in this field, examples of good practices and solutions for their transfer into health systems or if it would be ethical, practical and appropriate to detect diseases as early as possible using whole genome sequencing, what ways of multistakeholder collaboration can we propose in the future.
October 21 - 22. I participated in the Collaborate Summit (Lisbon), dedicated to the care of adults with rare diseases. The event was organized by Pfizer and we had as participants - patient organizations from all over the world, specialists, industry and government representatives.
October 24. We attended the debate "Solutions for addressing disinformation and anti-scientific narratives on health issues" (Bucharest), and we had as topics: (i) identifying the prevalent trends of disinformation related to the field of health in Romania, (ii) ) sharing experiences and best practices from the media, scientific community and public institutions in covering health-related topics and (iii) fostering collaboration between key actors, including the media, government agencies and health professionals, for the development of effective strategies to address these problems.
October 31. Organizing "Access for patients with rare diseases and cancers" event, in which we discussed the steps to shorten the path of patients with rare diseases and cancers to the healthcare professionals and to facilitate the access of patients to diagnosis and treatment.
At the event, we invited Prof. Dr. Dana Craiu, pediatric neurology primary physician, As. Univ. Dr. Diana Gabriela Bârcă, pediatric neurology primary physician, Cătălina Crainic, president of the Children's Joy Association and Adriana Tontsch, president of the Spina Bifida Association. The event was moderated by Dorica Dan and was organized with the support of Sanofi, Novartis, Bristol Myers Squibb, Janssen and UCB.
The conference is part of the ShareExperience 2023 project.
https://www.facebook.com/watch/live/?ref=watch_permalink&v=1485090485623709
II. News
September 7. On the occasion of World Duchenne Disease Awareness Day celebrated annually on September 7, the Alliance was actively involved in the "Breaking barriers" campaign (this year's topic). The Romanian National Alliance for Rare Diseases supports the patients living with Duchenne Muscular Dystrophy (DMD) and their families.
At NoRo Center, groups of patients (with Duchenne disease and other types of dystrophy) are organized on a regular basis and together with the patient organizations, the National Alliance for Rare Diseases organized information, training and advocacy activities on specific topics, in the interest of the community.
September 22. Organizing patient groups and finding support whenever it is needed at NoRo Center - #medicomrare project.
September 24. On the occasion of Atypical Hemolytic Uremic Syndrome (aHUS) Day, a rare & severe systemic disease that affects kidney function and is life-threatening, ANBRaRo supported the <<Capacities and possibilities>> awareness campaign, which aimed to highlight the achievements and aspirations of those living with atypical haemolytic uraemic syndrome
On this occasion, Dorica Dan, President of ANBRaRo stated "On this day we join the community of patients with Atypical Hemolytic Uremic Syndrome from around the world, drawing the attention of the public and the medical community in Romania to this rare disease that can occur in both children and adults ...First of all, let's think that HUS patients, like any other person, have their own aspirations, ambitions, are part of communities, have families, friends and a future that awaits them."
October 7. Bringing to the fore the issue of rare diseases and the immediate need to have integrated care for patients with rare diseases in a special edition of the TV show "Health with priority".
October 22-28. We supported the efforts of the Association of People with Glycogenosis on the occasion of glycogenosis awareness week. Patients with this rare disease are dependent on a continuous supply of glucose. Strict avoidance of catabolic periods is critical because even brief periods of catabolism can lead to profound hypoglycemia, lactic acidosis, and seizures.
October 23. We supported the World Kabuki Syndrome Awareness Day, a rare disorder that affects multiple parts of the body and is present from birth. Specific symptoms and severity may vary, and features often include a characteristic facial appearance, skeletal abnormalities, short stature; heart defects and intellectual disabilities.
October 25. On the occasion of International Spina Bifida and Hydrocephalus Day, we supported efforts to raise awareness of this rare disease.
III. UPCOMING EVENTS
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- November 2 – Launch of National Health Strategy, Bucharest
- November 3-4 – Conference Asociației Oamenilor Mici București, Bucharest
- November 6 – Patient Partnership Working Group and Digital Advisory Group Meeting – EURORDIS
- November 7 – Online meeting with Frambu - update the information & date for ECOU project
- November 8 - EuroNDD Workshop (online)– roundtable on the nutrition plans for patients with rare diseases (neuro)
- November 8 – ARPIM & Calea Europeană event - Strategia farmaceutică – cum putem susține inovația?
- November 9 - Roundtable - Management of Epidermolysis bullosa - Embassy of Sweden to Bucharest
- November 10 - Induction meeting - Evaluation of ERNs integration
- November 16-17 - Europlan Conference Zalău (details on the agenda & registration our Social Media account)
- November 17-18 – Cross-sector meeting on ECOU
- November 22-25 – EURORDIS Board, Barcelona
- Nov 29 – Dec 2 – Access to Care Conference, Viena
- December 1 - IAACD Webinar (International Alliance of Academies of Childhood with Disability) Global Listening and Sharing Sessions
- December 6-9 – ERN ITHACA Annual meeting, Dublin
- December 12 – Christmas Party
- December 11-12 – National Alliances Council, Bruxelles
- December 15-16 – Rare Diseases School for Journalists
- Patients Groups - online & face2face @ NoRo Center – permanent
- Cross-sector meetings in Cluj, Dolj and Iași Counties
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.
