evenimente apwr

European Meeting for Rare Diseases HelpLine

On 08.06.2012, the National Alliance for Rare Diseases was invited to attend the European HelpLine held in Paris within/by Eurordis alliance. This meeting was attended by members of the European Network Help-Line: France, Italy, Croatia (new member), Spain, Portugal, Romania, and Belgium.
Among the topics addressed at this meeting we can mention:
Establishing a European-wide single toll-free number for information related to rare diseases which will improve communication between existing HelpLine lines, will increase the visibility of the HelpLine service and therefore will improve the awareness of patients.
Conducting a detailed analysis of the results of the Caller Profiler Analysis November 2011. In this context, data was compared and useful information was changed between members of the European helplines.
Another topic discussed was the inclusion of HelpLine lines in the "Patient and Pharmaco-vigilant" project, which aims to increase public confidence on pharmaceutical regulatory system, increased transparency, access to information and also reduce mistrust on patients medical treatments.
Other topics discussed were the social networks for patients with rare diseases, specialized social services and integration of people with rare diseases in social policies.
Conclusions of the meeting:
All members agreed on the need for establishing a European-wide single toll-free number - 116. In this sense a letter will be sent on the behalf of the European Network for Rare Diseases HelpLine to the European Commission to reserve this number. If the request is accepted, each HelpLine Center will have 2 years to ensure all due diligence is made for the number to be functional.
All members have expressed their interest to participate in the project "Patient and Pharmaco-vigilant".
At the end of the meeting, it was decided that due to the projects in which the HelpLine European centers will get involved, another meeting will be required later this year.

 

Cuibuș Paula, psiholog APWR

European Forum – High quality social services in each community

Poiana Brașov, June 6 -7 2012

The ministry of Labour, Family and Social Protection (MMFPS) organized at Brasov, between 6 and 7 of June 2012, the European Forum „High quality social services in each  community – challenges and opportunities". The forum constituted a platform for dialog and experience share between the professionals in the field of the social services, both from the public sector and the private one, domestic and from abroad.

The RPWA’s representatives had the possibility to present the services of NoRo Centre in the workshop „What ‘reasonable cost’ means in the social services?” moderator Diana Chiriacescu, social services expert.

More information about this project may be found at http://www.serviciisociale.info.  RPWA’s specialists will continue to participate to events and workshops proposed by this project, with the scope to contribute to the improvement of the social services in Romania

Zsuzsa Almási, RPWA

Forumul european - Servicii sociale de calitate în fiecare comunitate

6-7 iunie

Ministerul Muncii, Familiei și Protecției Sociale (MMFPS) a organizat la Poiana Brașov, în perioada 6-7 iunie 2012, Forumul european „Servicii sociale de calitate în fiecare comunitate – provocări și oportunități". Forumul a constituit o platformă de dialog şi schimb de experienţă între profesioniştii din domeniul serviciilor sociale, atât din sectorul public, cât şi din cel privat, din ţară şi din străinătate.
Reprezentanții APWR au avut posibilitatea de a prezenta serviciile Centrului NoRo în grupul de lucru „Ce înseamnă „cost rezonabil” în serviciile sociale?”, moderator Diana Chiriacescu, expert servicii sociale.
Mai multe informații despre proiect se pot găsi la http://www.serviciisociale.info. Specialiștii APWR vor continua să participe la evenimente și grupuri de lucru propuse prin acest proiect, cu scopul de a contribui la îmbunătățirea serviciilor sociale din România.
Zsuzsa Almási, APWR

Conferință științifică cu participare internațională la Oradea

25-26 mai 2012

În perioada 25-26 mai 2012 Universitatea din Oradea - Facultatea de Geografie, Turism și Sport a organizat Conferința Științifică Națională cu participare internațională cu tema „Educația fizică și sportul în beneficiul sănătății” (ediția 38).
În prima zi au fost prezentate lucrări cu teme din domeniul kinetoterapiei și educației fizice și sportului, iar apoi au fost organizate două workshop-uri: „Prevenirea traumatismelor genunchiului în sport" și „Revenirea în joc. Conduita terapeutică şi posttraumatică". Aceste workshop-uri au fost susținute de către kinetoterapeutul Javier Linde, specializat în „Sciences of Physical Activity and Sport" și "Master in High Performance", Centrul de Antrenament Olimpic din Sant Cugat del Vallés, Barcelona, Spania.
A doua zi au fost organizate trei workshop-uri cu următoarele teme: „Principii de evaluare şi tratament la copiii cu paralizie cerebrală după conceptul NDT Bobath" susținut de Pereş Adrian, kinetoterapeut atestat în conceptul NDT Bobath, Grădiniţa „Casa Minunată” - Oradea; „Activități fizice pentru persoanele cu boli cardiace" prezentat de Friedrich Hainbuch, profesor asociat la Universitatea din Oradea, director al Institutului de Prevenţie şi Recuperare al Asociaţiei pentru Pacienţii cu Afecţiuni Fizice, Bonn - Germania, iar Carmen Şerbescu, conf. univ. dr., FGTS la Universitatea din Oradea a organizat „Arte străvechi aplicate în terapii moderne”.
Florica Tegzeș, kinetoterapeut APWR
 
 

The 6th European Conference for Rare Diseases

The European Conference for Rare Diseases was organized at Brussels, by EURORDIS in partnership with DIA. In May 22-nd, took place Eurordis’ General Convention, where there have been presented the activity reports for 2011 and there have been organized elections for some positions in the Board of Directors. During the General Convention, the President of APWR, Dorica Dan, presented the work tasks related to EJA specialized social services in the field of the rare diseases, informing Eurordis members about the proposed activities.

ECRD Conference took place between 23-rd and 25-th of May 2012 and gathered more than 700 participants from 55 countries. Almost half of the participants have been patients’ representatives, one third were specialists, academicians and authorities’ representatives, the rest being representatives of the officinal industry and of biotechnologies.

Our presence at this event was important, as we had the opportunity to get more information about the rare diseases – politics, treatments, official innovations, research – and we shared experience with other European patient’s organizations.

Dorica Dan has led a session destined to the transition period from childhood to the adult age in the rare diseases. The conclusion of the seminary was that practically, at European level there is no expertise in this domain, due to the fact that until recently the patients having rare diseases haven’t reach the adult age.

There have been organized two events during which there were underlined the possibilities to meet the other participants and to lay the foundation of a further cooperation.

Zsuzsa Almási, RPWA

Pages