List of services
ÅgrenskaActivities: Respite Care Services, Family Stays, Traning Courses Dates: All year long Target Population: Patients, Families, Professionals; Rare Diseases, Disabilities Age-Groups: Children and Adults Countries of Origin: Sweden Languages Spoken: Swedish, English Country: Sweden Contact Person: Gunilla Jaeger Anders Olauson Webpage: http://www.agrenska.se/Email: agrenska@agrenska.seTelephone: (0046)317509101
ANEMONI - Day care center of spastic and handicapped childrenActivities: Rehabilitation,Education,Social Inclusion , School inclusion; speech, occupational and physical therapy Dates: All year long Target Population: Patients; Cerebral Palsy and other disabilities Age-Groups: 2 to 14 years old Countries of Origin: Cyprus Languages Spoken: Greek , English, French, Bulgarian Country: Cyprus Contact Person: Polyvios Mylonas Webpage: www.cprehabcenter.comEmail: polyvios02@yahoo.com - kentro.spastikon@cytanet.com.cyTelephone: (00353) 12057200 Centre national de ressources handicaps rares - Épilepsies sévères - FAHRESActivities: Information, training, applied research, interventions and advice on care strategies and personal adapated projects, documentation centre and capitalisation of resources Dates: All year long Target Population: Patients; Carers; Professionals and public authorities; Rare handicap with epilepsy Age-Groups: Children; adults Countries of Origin: France Languages Spoken: French, English, Spanish Country: France Contact Person: Aymeric AUDIAU, Director Webpage: www.fahres.fr Email: contact@fahres.fr Telephone: (0033) 969368646CRE Enfermedades Raras (Creer)Activities: Respite Care Services; Personal assistance in in-patient and out-patient regime; support and training to families and carers; specialised training and support services for organisations and professionals; information and documentation; studies and research Dates: All year long Target Population: Patients, Families, Professionals, Rare Diseases Age-Groups: All Countries of Origin: Spain Languages Spoken: Spanish Country: Spain Contact Person: Marta Fonfría (Social Educator) Webpage: http://www.creenfermedadesraras.es/creer_01/index.htm Email: info@creenfermedadesraras.es - creenfermedadesraras@imserso.es Telephone: (0034) 947253950Asociatia Casa FaenzaActivities: Community center for children with autism providing therapies, training sessions and social support Dates: All year long Target Population: Patients Age-Groups: 0 to 16 years old Countries of Origin: Romania Languages Spoken: Romanian Country: Romania Contact Person: Piscuc Cristina Constantinela (Director) Webpage: http://www.autism.ro/faenza.htmlEmail: faenza@mail.regionalnet.orgTelephone: (0040) 0256487002
Cyprus Institute of Neurology & GeneticsActivities: Social support to patients and families; co-operation with the social services (local and national); home visits to patients for counseling about accessibility at home; volunteers program for social support in house Dates: All year long Target Population: Patients; Families; Carers; neurologic and genetic conditions Age-Groups: Children, Teenagers, Adults Countries of Origin: Cyprus or European citizens living in Cyprus Languages Spoken: Greek, English Country: Cyprus Contact Person: Marina Pavlou – Social Worker Webpage: www.cing.ac.cy Email: mpavlou@cing.ac.cy Telephone: (00357) 22392732
Debra CentreActivities: Information & Education, Support in Daily Life, Lobbying and Public Awareness, Organisation of Treatments and Check-ups, Psychological Support, Provision of Information on Social Services, Accommodation for Short Stay, Support in Transport Dates: All year long Target Population: Patients, Families, Professionals, Epidermolysis Bullosa Age-Groups: All Countries of Origin: Croatia Languages Spoken: Croatian, English, Serbian, Slovenian Country: Croatia Contact Person: Vlasta Zmazek Webpage: www.debra-croatia.comEmail: info@debra-croatia.comTelephone: (00385) 14555200 Een Häerz fir kriibskrank Kanner - A Heart for Cancer sick ChildrenActivities: Psychological Support; palliative care; information, guidance, social follow-up; support in daily life; lobbying and public awareness; support in transport for treatments/check-ups; horse and sub-water acoustical therapies, leisure programs Dates: All year long Target Population: Patients, families; Age-Groups: 0 to 22 years old Countries of Origin: Luxembourg, Belgium, France, Germany Languages Spoken: Luxembourgish, French, German, English, Portugese Country: Grand-Duchy of Luxembourg Contact Person: Mme Marie-Marthe Bruck-Clees Webpage: www.kriibskrankkanner.luEmail: secretariat@kriibskrankkanner.luTelephone: (00352) 51 46 29 1 Finnish Federation of Hard of Hearing (FFHOH)Activities: Courses, therapeutic recreational outings and joint activities: clubs, excursions, cultural events, and other gatherings; adult vacations Dates: All year long Target Population: Patients, families; hearing impairment Age-Groups: Children, Adults Countries of Origin: Finland Languages Spoken: Patients/Families Country: Finland Contact Person: Satu Laitinen (Course Director) Webpage: http://www.kuuloliitto.fi/fin/in_english/Email: satu.laitinen@kuuloliitto.fi Telephone: (00358) (09) 5803 830 FrambuActivities: Residential Courses, Summer Camps, Training Courses, Communication and Documentation Materials Dates: All year long Target Population: Patients, Families, Professionals; Rare Diseases Age-Groups: Children and Adults Countries of Origin: Norway Languages Spoken: Norwegian, English Country: Norway Contact Person: Lisen Julie Mohr Webpage: http://www.frambu.no/Email: info@frambu.noTelephone: (0047) 64856000 Miquel Valls FoundationActivities: Information, follow-up, domiciliary support and advice services; occupational therapy and psychology; bank of assistive technology products; multidisciplinary care at ALS Unit of the University Hospital of Bellvitge; Promotion of ALS research Dates: All year long Target Population: Patients and families; Amyotrophic lateral sclerosis Age-Groups: All Countries of Origin: Spain Languages Spoken: Catalan, Spanish, English Country: Spain Contact Person: Esther Sellés Webpage: http://fundaciomiquelvalls.org/es/Email: ela@fundaciomiquelvalls.orgTelephone: (0034) 937665969 Newlife Foundation for Disabled ChildrenActivities: Nurse helpine (free); paediatric disability equipment grants and loans; funding medical research; campaigning and awareness Dates: All year long (excluding UK bank holidays and between Christmas and New Year) Target Population: Patients, Families, Professionals; disabilities and terminal illnesses Age-Groups: Children and Adults Countries of Origin: United Kingdom; Nurse helpline and research services accept requests from other European countries Languages Spoken: English Country: United Kingdom Contact Person: Mr. Stephen Morgan, Head of Operations Webpage: www.newlifecharity.co.ukEmail: info@newlifecharity.co.uk - nurses@newlifecharity.co.ukTelephone: (0044) (0)1543462777 NoRoActivities: Training Courses, Day Care Centre (Therapies and Medical Evaluation), Empowerment Courses, Help Line Dates: All year long Target Population: Patients, Families, Professionals; Rare Diseases, Autism Spectrum Age-Groups: Children and Adults Countries of Origin: Romania, Hungary Languages Spoken: Romanian, English, Hungarian Country: Romania Contact Person: Dorica Dan Webpage: http://www.apwromania.ro/centrudezi Email: noro@apwromania.ro Telephone: (0040) 0260610033 PRIOR Plateforme Régionale d'Information et d'Orientation des Maladies RaresActivities: Information, Guidance, Social Follow-up and Training Dates: All year long Target Population: Patients, Families, Professionals, Rare Diseases Age-Groups: All Countries of Origin: France Languages Spoken: French Country: France Contact Person: Catherine Pateron in Angers; Blandine Legeay in Nantes Webpage: http://www.chu-angers.fr/?IDINFO=200_14395_7792 Email: prior@chu-angers.fr - prior@chu-nantes.fr Telephone: (0)820260010 (French blue line)Raríssimas - Casa dos MarcosActivities: Respite Care, Day Centre (Therapies and Medical Evaluation) Dates: All year long Target Population: Rare Diseases Age-Groups: Children, Adults Countries of Origin: Portugal Languages Spoken: Portuguese Country: Portugal Contact Person: Webpage: http://www.rarissimas.pt/casa-dos-marcos/ Email: info@rarissimas.pt Telephone: (00351) 217786100Pflegestützpunkte BerlinActivities: Network of 24 resource centres with telephone, live and domiciliary information and support services Dates: All year long Target Population: Patients and families; Disabilities Age-Groups: All ages Countries of Origin: Germany Languages Spoken: German Country: Germany Webpage: http://www.pflegestuetzpunkteberlin.de/ Telephone: 0800 59 500 59 (free number)V.A.D.L.R. Vivre avec une Anomalie du Développement en Languedoc RoussillonActivities: Information, Follow-up, Training, Practical Guides on Social, Employment and School integration Dates: All year long Target Population: Patients, Families, Professionals, Development Disorders Age-Groups: All Countries of Origin: France Languages Spoken: French Country: France Contact Person: Webpage: http://www.anomalies-developpement-lr.net/ Email: maladiesrares.lr@gmail.com Telephone: (0033) 467570562
Page created: 19/09/2012 Page last updated: 27/03/2014 |
No hay comentarios:
Publicar un comentario