evenimente apwr

Abilities for an independent life…

In 2012, at the Respiro NoRo Center, we set to organize a program by which young people with disabilities from Salaj county can participate in training activities in which they can develop the abilities to live an independent life. The program consists of 12 training modules of 2 days, each module being made in a different month, and the interval between sessions to be used by the participants in practicing what they have learned in everyday life. So, there have already been organized 3 training modules in January, February and March. The first module, organized on 26/27 Jan 2012, was attended by 7 young people with disabilities, who have had a social, psychological and kinetic interdisciplinary assessment, followed by training in preparing the meal and dining. The second module of the abilities for an independent life program,, organized on 23/24 Feb 2012, was attended by 8 young people with disabilities, whose program was focused on individual assessment of achieving the objectives from the first session, followed by their application in everyday life and the introduction of a new topic related to home cleaning and hygiene. The session ended with the establishment of homework to do at home per beneficiary until the new session next month.
At the third module 9 young people with disabilities attended and the program was focused on developing skills in home management, domestic safety and first aid.

Rare Disease Day 2012

At European level, Eurordis in partnership with the European Commission organized on Rare Disease Day a symposium with the theme European Model of Solidarity in rare diseases, to show the successes from the last decade and the key future actions. The event was held at the Residence Palace in International Press Centre in Brussels.
Among participants we can enumerate patients and patients' representatives, researchers, health professionals, members of the EU Committee of Experts on Rare Diseases, European parliamentarians, senior officials from the European Medicines Agency and the European Commission and representatives of the pharmaceutical industry and biotechnology .
The meeting highlighted the value of the actions to address at  EU level in the field of rare diseases and demonstrated that Eurordis initiatives in partnership with the European institutions have a positive impact on the health of all EU citizens and is a model that is extended also outside the EU.
The symposium was attended from Romania by Dorica Dan - President ANBRaRo, Dan Tiberiu - Executive RPWA Mrs. Monica Hercus - Advisor Ministry of Health and Mr. Stefan Staicu, Health Attaché at the Permanent Representation of Romania to the European Union.
 

Rare Disease Day 2012

At European level, Eurordis in partnership with the European Commission organized on Rare Disease Day a symposium with the theme European Model of Solidarity in rare diseases, to show the successes from the last decade and the key future actions. The event was held at the Residence Palace in International Press Centre in Brussels.
Among participants we can enumerate patients and patients' representatives, researchers, health professionals, members of the EU Committee of Experts on Rare Diseases, European parliamentarians, senior officials from the European Medicines Agency and the European Commission and representatives of the pharmaceutical industry and biotechnology .
The meeting highlighted the value of the actions to address at  EU level in the field of rare diseases and demonstrated that Eurordis initiatives in partnership with the European institutions have a positive impact on the health of all EU citizens and is a model that is extended also outside the EU.
The symposium was attended from Romania by Dorica Dan - President ANBRaRo, Dan Tiberiu - Executive RPWA Mrs. Monica Hercus - Advisor Ministry of Health and Mr. Stefan Staicu, Health Attaché at the Permanent Representation of Romania to the European Union.
 

Group of patients with Thalassemia Major

In 2012, the first group of patients affected to come to the Center for Rare Diseases NoRo, was organized during 30.01 – 03.02.2012, and consisted in 11children affected by Thalassemia Major and one attendant. During the 5 days of activities, they benefited of interdisciplinary evaluation, recovery through physiotherapy, hydrotherapy, occupational therapy and instruction in different social, psychological and medical themes. With the organizing of this group, the Prader Willi Association from Romania also started the campaign dedicated to the Day of Rare Diseases, this being set at a European level, on 29th February.

Through the equipment we have at the NoRo Center and with the support of specialists from the University of Medicine Timisoara, we managed to organize the first videoconference, in which the patients from the NoRo Center could benefit of medical training from the best specialist from Romania in this field, Dr. Serban Margit.

In the organizing this kind of groups, we started from principles, according to which, the information in the area of rare diseases is essential for the patients with rare diseases, and the recovery process has to be a continuous activity that the patient needs to learn with the support from specialists, and then to practice it in everyday life.

We consider that the objectives that the team of specialists have set on the organizing this group have been met, all the patients being satisfied with the informing and training services they benefited, especially because the information received have an immediate applicability, in order to overcome the difficult situations they face daily.

Maria Brazdau, social worker, NoRo Center

Zilele Medicale Sălăjene

In cadrul Zilelor Medicale Salajene, peste 250 de medici din judeţul Sălaj au fost informaţi cu privire la activităţile APWR.
Activitatea a fost organizata de Colegiul Medicilor Salaj in parteneriat cu APWR. Am participat cu un stand de prezentare, am lansat raportul anual pe 2005 si Dr. Szekely Aurelia a prezentat Rolul Centrului de Informare pentru Boli Rare Zalau.

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