EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013 Copenhagen, October 2013 Dorica Dan 1

EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013 A BOUT THE TRAINING PROVIDER 2 Romanian Prader Willi Association RPWA was created in May October 16, 2005 we opened the Information Center for Rare Genetic Diseases. 9 August 2007 – established the Romanian National Alliance for Rare Diseases 29 February 2008 – partnership with Romanian Ministry of Health for a National Plan for Rare Disease June 2008 – the first national program for rare diseases 2011 – Opened NoRo Center established ARCrare Romania

EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013 A BOUT THE TRAINING F ACT S HEET Diseases or Therapeutic Domain Target Public 3 Patients Personal assistants Therapists Social workers Psychologists Volunteers Nurses Doctors EDUBOLIRARE – an online platform for information and education Rare diseases; The training courses are designed for professionals involved in diagnosing and management of RD

EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013 A BOUT THE TRAINING F ACT S HEET Total hours of training Place for face to face training Format of the programme Nr. hours of face to face training Nr. hours of eLearning Nr. hours of group/class training Nr. hours of individual training % of practical training 4 Ex. 108 h / depends on the training 108 h: 36 h theory and 72 h practice 36 h 72 h Max. 6 h/ day, participants NoRo Center, Center for Information about rare genetic diseases; 66% (2/3 of the time)

EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013 A BOUT THE TRAINING F ACT S HEET Total costs of the training/person Costs covered by participants Costs and Funding Funding sources for remaining costs 5 100% in case that we have not a project to cover the cost or other sources of funding; 100 eur/person RPWA Even when we provide the training for free, it is a worthwhile investment in long term!

EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013 A BOUT THE TRAINING F ACT S HEET Trainers Background Partners 6 Romanian Genetics Society in the development of the module of RD; Ministry of Health – communication and promotion of the project to the medical departments; Romanian Doctors Colegium - accreditation Frambu – general support in the project implementation and know how; Ministry of Work and Education – authorization Medical Universities – trainers - therapists, doctors, psychologists, special education teachers, kinetoherapists, all trained as trainers of adults;

EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013 A BOUT THE TRAINING M ISSION AND O BJECTIVES 7 What is An innovative initiative of Romanian Prader Willi Association which aims to highlight the potential of web resources in the field of training and information on rare diseases. Mission : to improve the competence of professionals working in the specialized social services for RD. Objectives: 1.Create curricula and adapt the existent training courses for professionals and add knowledge about RD, in order for provide them with necessary skills when patients with RD ask for their services. 2.This way, the training courses can be also authorized and accredited by the competent authorities.

EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013 A BOUT THE TRAINING C ERTIFICATION AND RECOGNITION 8 Rehabilitation teacher (Code COR: ) Who should attend the course? Specialists (psychologists, special education teachers, social workers, etc.) from recovery centers for people with disabilities, community services, daycare centers for children and adults; Teachers from special and general education system; Staff from hospitals and clinics (nurses, occupational therapists, etc.); A recognized certificate is provided as the job is in COR nomenclature; A module of RD is added at the official training curricula;

EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013 A BOUT THE TRAINING P ROGRAMME C ONTENTS 9 Rehabilitation teacher (Code COR: ) Knowledge or studies required: Secondary education (high school or post-high school) Course contents (table of contents): Rare diseases management 1.Interpersonal Communication 2.Multidisciplinary teamwork 3.Personal development and continuous professional training 4.Establishing the plan of specific activities for stimulating and recovery of the assisted person 5.Organize activities 6.Providing care of the assisted person 7.Rights and interests of the beneficiary 8.Participation at the evaluation of the beneficiary 9.Participation in the implementation of the personalized intervention plan 10.The development of personal skills and social autonomy to the assisted person 11.Overseeing the integration/ reintegration of beneficiary in the community 12.The development of positive attitudes towards themselves and others.

EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013 A BOUT THE TRAINING P ROGRAMME C ONTENTS 10 Training methods: Blended Learning: meeting face to face and online self-study Completion of the course Written examination and a graduation practical project Practical activities in NoRo Center Certificate type: Graduation Certificate recognized by the Ministry of Education and Ministry of Labor. Accreditation system: The course is accredited by the National Council for Adult Professionals Training. Duration of training: 108 hours of which 36 hours theory and 72 hours practice training

EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013 A BOUT THE TRAINING E VALUATION AND IMPACT 11 Each training course is evaluated by the participants in terms of: content of curricula, trainer performance, facilities, support documents; For final exams, the evaluation will be assisted by a commission of National Authority of Qualification. The structure and delivery of the training program can be individualized to meet the needs of specific programs or communities. Respecting the common requirements but adding specific modules on RD could be a way to do this trainings or… ulcurs1979xll_ro.html ulcurs1979xll_ro.html

EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October When you know better you do better. Maya AngelouMaya Angelou High achievement always takes place in the framework of high expectations… THANK YOU!