miércoles, 2 de abril de 2014

EURORDIS - The Voice of Rare Disease Patients in Europe



EURORDIS - The Voice of Rare Disease Patients in Europe



PATIENTS, ORGANISATIONS, SERVICES
Read about living with a rare disease and the services available
Registration now open for services provided by Casa dos Marcos Resource Centre, run by the Portuguese Alliance for RDs







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

 

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

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

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

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

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

Page created: 19/09/2012
Page last updated: 27/03/2014
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