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.

Comitetul de Experţi al Uniunii Europene (EUCERD)

26-27 ianuarie 2012, Luxemburg
 
În calitate de membru EUCERD, Dorica Dan a participat la cea de-a  patra reuniune a Comitetului de Experţi al Uniunii Europene (EUCERD) care a avut loc la 26-27 ianuarie 2012 în Luxemburg.
Întâlnirea plenară a fost precedată de întâlniri pregătitoare organizate de către grupurile de lucru și au condus la discuţii ample cu privire la două aspecte principale de discuţie, valoarea clinică adăugată a medicamentelor orfane (CAVOD) şi a reţelelor europene de referinţă (ERN). Grupul pacienților a avut o întâlnire cu biroul EUCERD pentru a-și prezenta prioritățile organizațiilor de pacienți în cadrul acțiunilor generale EUCERD.
EUCERD a început procesul de elaborare a recomandărilor privind rețelele europene de referință (ERN) pentru a servi la elaborarea criteriilor pentru ERN. Un workshop pe această temă va avea loc pe 19 iunie 2012, înainte de următoarea reuniune a EUCERD. Adoptarea acestor recomandări este planificată pentru a şasea reuniune a EUCERD în noiembrie 2012. Statele membre au fost îndemnate să lucreze la desemnarea centrelor de expertiză la nivel naţional, folosind „Recomandările EUCERD privind criteriile de calitate pentru centrele de expertiză pentru Boli Rare din statele membre", adoptată în octombrie 2011, în așa fel încât acest lucru să fie făcut înainte de stabilirea ERN .
În cadrul reuniunii EUCERD au mai fost prezentate și rezultatele privind noile practici de screening pentru nou născuţii din Uniunea Europeană. Un atelier de lucru privind screening-ul nou-născuților, cu participarea reţelei UE de experţi este planificată pentru primul trimestru al anului 2013.
Parteneriatul european pentru lupta împotriva cancerului (EPAAC) a fost prezentat la EUCERD şi a fost inițiată o dezbatere privind sinergiile dintre această iniţiativă şi acţiunile în domeniul bolilor rare.
Reprezentanţii statelor membre ale EUCERD au fost solicitați să raporteze în legătură cu  progresele înregistrate în ţara lor, faţă de elaborarea unui plan naţional sau o strategie de combatere a bolilor rare, așa cum este stabilit de către Recomandarea Consiliului privind o acţiune în domeniul bolilor rare pentru 2013. Elaborarea sau punerea în aplicare a acestor planuri sau strategii pare să fi luat avânt; reprezentanţilor statelor membre li s-a cerut să identifice persoana responsabilă de elaborarea sau punerea în aplicare a planului lor naţional / strategie, în scopul constituirii unei rețele în proiectul Europlan 2.
            A fost anunțată lansarea EJA pentru 12-13 martie la Paris și a fost prezentat modul de colectare a informațiilor pentru raportul „State of the art of Rare Diseases in Europe”.
A fost prezentat programul Conferinţei Europene de boli rare și medicamente orfane care va avea loc la Bruxel în mai și principalele acțiuni planificate pentru Ziua Internațională a bolilor rare 2012.
 Dorica Dan, președinte APWR

Committee of Experts of the European Union (EUCERD)

As a EUCERD member, Dorica Dan participated in the fourth meeting of the Committee of Experts of the European Union (EUCERD) held on 26-27 January 2012 in Luxembourg. Plenary meeting was preceded by preparatory meetings organized by working groups and led to extensive discussion on two main issues for discussion, clinical added value of orphan drugs (CAVOD) and European Reference Networks (ERN). Patient group had a meeting with EUCERD office to present the priorities of patient organizations in general actions of EUCERD. EUCERD began making recommendations on European Reference Networks (ERN) to serve the development of ERN criteria. A workshop on this topic will take place on June 19, 2012, before the next meeting of EUCERD. The adoption of these recommendations is planned for the sixth meeting of EUCERD in November 2012. Member States were urged to work on appointing centers of expertise at national level, using "EUCERD recommendations on quality criteria for Centres of Expertise for Rare Diseases in Member States", adopted in October 2011, so this should be done before setting ERN. In the EUCERD meeting were also presented the results on new newborn screening practices in the European Union. A workshop on newborn screening, with the participation of the EU Network of experts is planned for the first quarter of 2013. European Partnership for Action Against Cancer (EPAAC) was presented to EUCERD and a debate on synergies between this initiative and action on rare diseases was started. EUCERD representatives of the Member States were asked to report on progress made in their country to develop a national plan or strategy for rare diseases as determined by the Council Recommendation on an action in the field of rare diseases for 2013. Development or implementation of such plans or strategies seems to be gaining momentum, representatives of the Member States were asked to identify the person responsible for developing and implementing their national plan / strategy for the establishment of a networking project Europlan 2. It was announced the EJA launch for March 12 to 13 in Paris and presented the collection of information for the report "State of the Art of Rare Diseases in Europe". A program was presented to the European Conference of rare diseases and orphan drugs to be held in Brussels in May and the main actions planned for the International Day of Rare Diseases 2012.

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.
 

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