Annual Activity Report 2010 Romanian Prader Willi Association ...
Annual Activity Report 2010 Romanian Prader Willi Association ...
Annual Activity Report 2010 Romanian Prader Willi Association ...
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Members of the National Committee for Rare Diseases<br />
Arion Camelia<br />
Dr. Badiu Corin<br />
Barna Laurenţiu<br />
Băican Cosmina<br />
Dr. Burada Florin<br />
Câmpan Mariana<br />
Cordea Carmen<br />
Dr. Covaciu Claudia<br />
Cristea Monica<br />
Dan Dorica<br />
Daniel Andrei<br />
Darko Emese<br />
Dr. Dobrescu Amelia<br />
Dombi Istvan<br />
Fazacas Mihaiela<br />
Dr. Gafencu Mihai<br />
Ghilea Ioana<br />
Dr. Gorduza Vlad<br />
Dr. Isar Cristina<br />
Joldeş Iulia<br />
Lazar Zsuzsa<br />
Dr. Moldovan Dumitru<br />
Pastor Aida<br />
Dr. Plaiasu Vasilica<br />
Pleticha Rob<br />
Dr. Pop Victor<br />
Popa Doina<br />
Porumb Darius<br />
Dr. Puiu Maria-Julieta<br />
Dr. Rotaru Ioana<br />
Dr. Rusu Cristina<br />
Sabău Amalia<br />
Dr. Severin Emilia<br />
Dr. Skrypnyk Cristina<br />
Dr. Szekely Aurelia<br />
Torje Claudia<br />
Dr. Vladu Cristina<br />
Sălaj County Council<br />
Zalău Local Council<br />
EURORDIS<br />
Genzyme<br />
Innovation Norway<br />
Kindness for Kids<br />
SC Mag Service SRL<br />
SC Transimont SRL<br />
SC TraProMec SRL<br />
Novartis<br />
PSD Zalău<br />
ROAD<br />
SC Accent Art SRL<br />
SC Duo Select SRL<br />
SC Electrogrup SRL<br />
SC Forsacom SRL<br />
SC GFM SRL<br />
SC Info Plus SRL<br />
Funders and sponsors<br />
SC Tehno Print SRL<br />
SC Tenaris Silcotub SA<br />
SC Titan Comert SRL<br />
1. Increasing the involvement of patients with<br />
rare diseases in developing European and<br />
national policies and strategies for health,<br />
social assistance and appropriate education<br />
for people affected by rare diseases<br />
2. Improvement in information, training and<br />
community integration for patients with<br />
rare diseases<br />
3. Improving the competencies of health<br />
professionals, social, educational professionals<br />
etc., for an integrated approach for<br />
patients with rare diseases<br />
1. Introducing the National Plan for Rare<br />
Diseases in the National Public Health<br />
2. Continuing the Rare Disease Day Campaign<br />
3. Launching and functioning of the virtual<br />
platform for rare diseases:<br />
www.edubolirare.ro<br />
4. Ensuring the sustainability of NoRo project<br />
5. Official opening of the Pilot Reference<br />
Centre for Rare Diseases “NoRo”<br />
6. Organising groups/courses for patients and<br />
finding the necessary funding<br />
7. Organizing courses for specialists<br />
Strategic objectives of RPWA for 2011<br />
4. Implementation and certification of<br />
integrated management services provided<br />
by the association<br />
5. Increasing the income of the association<br />
by initiating and developing forms of social<br />
economy<br />
6. Diversification of funding resources from<br />
community<br />
Strategic actions in 2011<br />
8. Organising a European Conference for Rare<br />
Diseases<br />
9. Organizing the Third East European<br />
Conference <strong>Prader</strong> <strong>Willi</strong><br />
10. Continuing the Big Brother Big Sister<br />
project<br />
11. Initiating social entrepreneurship activities<br />
12. Implementing quality standards for our<br />
services<br />
13. Promoting our services at national and<br />
international level<br />
<strong>Annual</strong> <strong>Activity</strong> <strong>Report</strong> <strong>2010</strong> | <strong>Romanian</strong> <strong>Prader</strong> <strong>Willi</strong> <strong>Association</strong> 33
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