Grundtvig Learning Partnerships
2011-1-RO1-GRU06-14989 1

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Partners

Partners are Association For Muscular Dystrophy Research and Assistance – Parent Project, from Romania,Fondazione Ospedali Riuniti Ancona, Italy, University Educational Circle, Riga, Latvia, Action Duchenne (formally Parent Project), London, United Kingdom. Project coordinator is University of Craiova from Romania.

UNIVERSITATEA DIN CRAIOVA
UNIVERSITATEA DIN CRAIOVA – UNIVERSITY OF CRAIOVA (UCV – RO)
        University of Craiova (UCV) is situated in the South-Western Region SWR-Oltenia, Romania. UCV is a public institution of higher education, founded in 1947, gaining experience and importance every year. Counting more than 1100 teaching staff members and more than 30000 students, it is one of the biggest Higher Education Institution in RO. Comprises 17 faculties, offering a wide field of study programmes: sports and kinetotherapy (rehabilitation), sciences, humanities, social studies, history, economics, agriculture, law, theology, arts, engineering and so on (33 specializations). UCV organizes Bachelor Degree programmes, Master Degree, Ph.D., in over 70 fields. The Distance learning system is extensively used, especially in the adult education system.

Expertise: design of methodologies in adult education, IT, ODL, publication of scientific periodicals, design and implementation of learning materials; promotion of LLL, exchanges of experience and best practice, development of activities that increase the awareness of EU.

UCV is responsible for project coordination, general project management and administration. UCV is involved in the conception of the educational materials in cooperation with people with NMD (through its ‘Training Centre for Health Care, Prophylactic and Rehabilitation Services’), translation into Romanian language, implementation and dissemination activities. As Coordinator, endowed with the most modern equipment, UCV shall provide technological and linguistics supports to ensure an excellent level results: accomplish the NMD-PRO website and publishing of the Guidebook for NMD professional parent/patient and NMD-PRO booklet in his own printing house.

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     ASOCIATIA PARENT PROJECT -Asociatia Pentru Cercetare si Asistenta in Distrofia Musculara- PARENT PROJECT ROMANIA (PP – RO)
     The Romanian Parent Project – Association For Muscular Dystrophy Research and Assistance (PP), founded by a group of parents and grandparents of children diagnosed with Duchenne muscular dystrophy, is a non profit organization whose objectives are to establish a Resource Center for Muscular Dystrophies and neuromuscular disorders assistance, funding scholarships for the training of Romanian specialists, to promote contact, communication and exchange of valuable information in the field, to ensure awareness throughout the medical and social community and to inform parents around the country. Since its launch in March 2004, PP’s focus has been on the development of tools that clinicians and scientists need to bring novel therapeutic approaches through pre-clinical development and into the clinic, and on establishing best-practice care for neuromuscular patients all over the country.

PP RO is also the Coordinator of Romanian DMD/BMD Patient Registry (online database for Romanian patients diagnosed with Duchenne / Becker Muscular Dystrophy), a fundamental tool for obtaining an overview about these diseases and the needs of patients in Romania, with the purpose of closer links between registered patients and medical staff for an easier access to clinical trials regarding new therapies and a better understanding of muscular dystrophies.

As a Partner, which is situated in a disadvantaged area and having participants with specific needs (parents/patients disabled by NMDs and at risk of social exclusion), PP is involved in all project phases: planning (needs analysis and setting objectives which are promoting the expression of demand), in the conception of the educational materials, dissemination of the project results on a local/regional/national/EU level through its partnerships with the worldwide United Parent Projects Muscular Dystrophy (UPPMD) and TREAT-NMD (the EU funded ‘network of excellence’ for the neuromuscular field).

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   FONDAZIONE OSPEDALI RIUNITI ANCONA ONLUS (FOR – IT)

    Fondazione Ospedali Riuniti Ancona (FOR) is a medical and volunteer organization working for Azienda Ospedaliero Universitaria Ospedali Riuniti Ancona (AOU ORA) which will be “third party” of the project. It is a non-profit organization founded on February 2009 inside Ancona University Hospital. FOR was constituted considering that an Ancona University Hospital it is not only a place of care and/or illness, but a complex environment where every day more than 10,000 among professional and citizens share a great quantity of positive human relations: trust, acts of love, passion for work.

Fondazione Ospedali Riuniti Ancona has been created to achieve the following objectives:

  • 1) To strength and improve quality level of humanization, respect and empathy of the community
  • 2) To become “intelligent terminal” looking forward citizens needs
  • 3) To improve the quality comfort standards for both patients and their families
  • 4) To support the development of scientific research finalized to improve and/or provide care and training
  • 5) To improve employees involving because a peaceful and cooperative environment arise better results both on technical and human side.

Fondazione Ospedali Riuniti Ancona of course unit with Azienda Ospedaliero Universitaria Ospedali Riuniti Ancona is already working in activities of family training of patients both children and adults with neuromuscular disabilities. In order to strength and improve efficiency and efficacy of the structured activities planned for the purpose FOR will take over and share with other partners target group needs, methodologies and best practice.

As a NMD-PRO partner, FOR is responsible for organizing the 2nd transnational workshop ”Facilitating parental participation in multidisciplinary team care of neuromuscular disabled children”, planning, monitoring, data raising, working on all project results and their translation into Italian language, dissemination and mainstreaming activities. FOR IT will incorporate the project activities in to its family/patients training of patients both children and adults with neuromuscular disabilities and volunteers training (professional and citizens tending NMD disabled).

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      UNIVERSITY EDUCATIONAL CIRCLE (UEC – LV)

University Educational Circle (UEC LV) collaborates with universities, schools and teachers of Latvia and many European countries. It is working in close cooperation with the University of Latvia and educational institutions all over Europe to manage European seminars, courses and projects. Teacher trainers and researchers at the University Educational Circle are from the University of Latvia and have experience as teacher education program directors, teacher trainers and researchers in the field of education. The University Educational Circle collaborates with the Council of Pedagogues of Latvia, Association of Language Teachers of Latvia. The professors and researchers of the University Educational Circle participate actively in the conferences organized by the Association of Teacher Educators in Europe (ATEE) and other international conferences in the field of education. It has participated in GINCO (Grundtvig International Network of Course Organizers) conference in Izmir, Turkey in October 2010. UEC will incorporate project’s learning activities into its current training courses, will develop new curriculum in European diversity education and inclusive approaches for teachers, teachers trainers, educational guides and counsellors, headmasters, school policy makers, psychologists, nurses.

UEC is involved in the implementation of all project activities and have the specific responsibility of organizing the 3rd meeting and transnational workshop ”Community integration of adults with neuromuscular disability”, and as a member of European Teachers Network (ETSize) will contribute to give an European dimension for NMD-PRO project by adapting the learning materials for primary and secondary schools teachers working with NMDs disabled children and through dissemination activities.

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    ACTION DUCHENNE LIMITED (AD – UK)
   Action Duchenne AD (formally PARENT PROJECT UK) is the leading national charity and was established in 2001 to find a cure and promotes education, research and campaigns for better medical care for Duchenne and Becker Muscular Dystrophy. We aim:
1) To be a leader in supporting innovative research to cure and treat Duchenne
2) To work as a partner with organisations providing resources to help to improve the length and Quality of Life of those living with Duchenne Muscular Dystrophy
                                 3) To be led by parents and young people affected by Duchenne and Becker Muscular Dystrophy

Action Duchenne has networks of Parent Action Groups across the UK and Ireland and holds an international conference every year to bring together researchers and families to exchange new research developments and provide a vital meeting venue for scientists. In 2005 Action Duchenne launched the Duchenne Registry www.dmdregistry.org , the first National Duchenne database that holds gene information of people living with Duchenne and can be used to speed up the recruitment of patients for clinical trials. In 2006 Action Duchenne launched a comprehensive learning and behaviour toolkit for use by parents and education professionals and has subsequently launched a national education programme for children with Duchenne. Also through its Race Against Time Campaign it has successfully lobbied the Government to provide improved medical care for those living with Duchenne.

In this project AD is involved in the design of programmes and education to improve the management and medical care for Muscular Dystrophy, will raise awareness of the needs of those living with Duchenne and Becker with UK Governments and policy makers, develops new Campaigns, Projects and disseminates information through Publications and Conferences to promote best practice for Standards of Care.

AD is also responsible for the 4th meeting and transnational workshop: ‘Challenges in medical therapies and rehabilitation management of neuromuscular diseases’ and will integrate the project activities and results into their parents’s trainings and adult patients, in its current social, advocacy, clinical, educational programs and campaigns.

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