EURORDIS - The Voice of Rare Disease Patients in Europe

EURORDIS - The Voice of Rare Disease Patients in Europe

PACIENTES, ORGANIZACIONES, SERVICIOS

Leer sobre cómo vivir con una enfermedad rara y los servicios disponibles La EB House de Austria mejora la calidad de vida de las personas con Epidermolisis Bullosa mediante unidades ambulatorias, de investigación y academia Alan asbl (Maladies Rares Luxembourg) Ågrenska Anemoni Asociatia Casa Faenza Centre for Rare Disorders -  Rikshospitalet Centre National de Ressources Handicaps Rares - Épilepsies sévères - FAHRES Centre National de Ressources Handicap Rare La Pépinière  CRE Enfermedades Raras (Creer) CRESAM Cyprus Institute of Neurology & Genetics Debra Centre EB House Austria (Centre of Expertise for Epidermolysis bullosa, EB) Een Häerz fir kriibskrank Kanner - A Heart for Cancer sick Children Finnish Federation of Hard of Hearing (FFHOH) Frambu NoRo Miquel Valls Foundation  Newlife Foundation for Disabled Children PRIOR Plateforme Régionale d'Information et d'Orientation des Maladies Rares Raríssimas - Casa dos Marcos Pflegestützpunkte Berlin V.A.D.L.R. Vivre avec une Anomalie du Développement en Languedoc Roussillon ALAN asbl (Maladies Rares Luxembourg) Activities: Resource Center; Therapeutical recreation; Children and family activities; Well-being courses Dates: All year long Target Population: Patients, families; Rare diseases Age-Groups: All ages Countries of Origin: Luxembourg, Belgium, France, Germany Languages Spoken: Luxemburgish, French, German, English, Portuguese Country: Luxembourg Contact Person: Gaby Turmes Webpage: http://www.alan.lu/alan/ Email: gaby.turmes@alan.lu Telephone: (00352) 266112 Ågrenska Activities: 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.se Telephone: (0046)317509101 ANEMONI - Day care center of spastic and handicapped children Activities: 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.com Email: polyvios02@yahoo.com - kentro.spastikon@cytanet.com.cy Telephone: (00353) 12057200 Asociatia Casa Faenza Activities: 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.html Email: faenza@mail.regionalnet.org Telephone: (0040) 0256487002 Centre for Rare Disorders -  Rikshospitalet Activities: Interdisciplinary and nationwide competence centre offering information, counselling and seminars Dates: All year long Target Population: Patients; families; professionals; rare diseases: Congenital anomalies; Congenital liver diseases; Inborn errors of metabolism; Congenital thrombocytopenia; Congenital haemophilia; Primary immunodeficiencies; Congenital skin diseases; Hereditary eye and central nervous system disorders Age-Groups: All ages Countries of Origin: Norway Languages Spoken: Norwegian, English Country: Norway Contact Person: Olve Moldestad Webpage: www.sjeldnediagnoser.no Email: sjeldnediagnoser@ous-hf.no Telephone:  (0047) 23 07 53 40   Centre National de Ressources Handicaps Rares - Épilepsies sévères - FAHRES Activities: 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) 969368646 Centre National de Ressources Handicap Rare La Pépinière Activities: Gathering of experts and of information; dissemination of information; evaluation of complex cases; counselling and support to professionals working with patients at local level Dates: All year long Target Population: Patients; Professionals; Visual and hearing impairment associated to other symptoms, generating a rare disability Age-Groups: All ages Countries of Origin: France Languages Spoken: French Country: France Contact Person: Webpage: www.cnrhrlapepiniere.fr Email: kdhaussy@anpea.gapas.org Telephone: (0033) 0320971731 CRE 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) 947253950 CRESAM - Centre National de Ressources Handicaps Rares Surdicécité Activities: Evaluation of complex cases, elaboration of strategies of care, training, counselling and support to professionals working with patients at local level Dates: All year long Target Population: Patients; Families; Professionals; Hearing and visual impairment Age-Groups: All ages Countries of Origin: France Languages Spoken: French, English Country: France Contact Person: Serge Bernard, Director Mylène Bachelier, Assistant to the Director Webpage: www.cresam.org Email: centre.res@cresam.org Telephone: (0033) 549438050 Cyprus Institute of Neurology & Genetics Activities: 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 Centre Activities: 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.com Email: info@debra-croatia.com Telephone: (00385) 14555200 EB House Austria (Centre of Expertise for Epidermolysis bullosa, EB) Activities: Outpatient Unit: medical diagnosis, treatment and care for patients with EB; family members’ training and social counselling; cooperation with nearly all other departments of the General Hospital Salzburg. Research Unit: clinical and basic research; gene therapy, immunology, cancer, wound healing, therapeutic targets; clinical trials. Academy Unit: networking, training and education for professionals, public relations Dates: All year long Target Population: Patients; Families; Professionals; Epidermolysis bullosa Age-Groups: All ages Countries of Origin: Austria; all countries Languages Spoken: German, English, French, Spanish Country: Austria Contact Person: Gabriela Pohla-Gubo, PhD (Coordinator) Webpages: http://www.eb-haus.org/ - http://www.eb-haus.org/en/home.html Email: info@eb-haus.org Telephone: (0043) 662 44 82 31 10 Een Häerz fir kriibskrank Kanner - A Heart for Cancer sick Children Activities: 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.lu Email: secretariat@kriibskrankkanner.lu Telephone: (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 Frambu Activities: 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.no Telephone: (0047) 64856000  Miquel Valls Foundation Activities: 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.org Telephone: (0034) 937665969 Newlife Foundation for Disabled Children Activities: 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.uk Email: info@newlifecharity.co.uk - nurses@newlifecharity.co.uk Telephone: (0044) (0)1543462777 NoRo Activities: 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 Rares Activities: 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 Marcos Activities: 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) 217786100 Pflegestützpunkte Berlin Activities: 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 Roussillon Activities: 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