jueves, 22 de mayo 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
RehabCare's respite care services give people with disabilities a holiday while families take a break from full-time caring

List of services

Ågrenska

Activities: Respite Care Services, Family Stays, Training 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
Webpage: http://www.agrenska.se/
Email: agrenska@agrenska.se
Telephone: (0046)317509100

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

Eesti Agrenska Fond

Activities: Home based respite services, respite weekend stays, summer camps
Dates: Specific dates at weekends and school holidays, home care on request
Target Population: Patients; Rare and more common diseases
Age-Groups: 4 to 25 years old
Countries of Origin: Estonia
Languages Spoken: Estonian and English
Country: Estonia
Contact Person: Tiina Stelmach and Krislin Padjus
Webpage: www.agrenska.ee
Email: agrenska@agrenska.ee
Telephone: (0037) 25272108
Tiina Stelmach;  (0037) 253637175 Krislin Padjus

Hôpital Marin d'Hendaye

Activities: Respite Care Service
Dates: All year long
Target Population: Patients, beuromuscular diseases, Huntington disease, ataxias, amyotrophic lateral sclerosis, Strümpell Lorrain, Locked-in syndrome, quadriplegic and assisted breathing
Age-Groups: Children and Adults
Countries of Origin: France
Languages Spoken: French
Country: France
Contact Person: Dr. Brigitte Soudrie, brigitte.soudrie@hnd.ap-hop-paris.fr
Webpage: http://etablissements.hopital.fr/annuaire_hopital.php?id=5504
Email:  brigitte.soudrie@hnd.ap-hop-paris.fr
Telephone: (0033) 559480820

Hospiz Stuttgart

Activities: Respite Care Service, grief counseling for children and adolescents
Dates: All year long
Target Population: Patients, siblings; serious illnesses
Age-Groups: 0 to 18 years old
Countries of Origin: Germany
Languages Spoken: German
Country: Germany
Webpage: http://www.hospiz-stuttgart.de/
Email: info@hospiz-stuttgart.de
Telephone: (0049) 0711 23741

Kinderhospiz Bethel

Activities: Respite Care Service
Dates: All year long
Target Population: Patients, families; serious illnesses
Age-Groups: 0 to 18 years old
Countries of Origin: Germany
Languages Spoken: German
Country: Germany
Contact Person: Ulrike Lübbert
Facility Manager
Webpage: http://www.kinderhospiz-bethel.de
Email: ulrike.luebbert@bethel.de
Telephone: (0049) 0521 144 2650 

Kinderhospiz Sonnenhof

Activities: Respite Care Service, sibling and parent support programmes
Dates: All year long
Target Population: Patients, siblings and parents; serious illnesses (e.g. blood disorders or cancer, cystic fibrosis, muscular dystrophy, or other metabolic diseases, neurological disorders)
Age-Groups: 0 to 18 years old
Countries of Origin: Germany
Languages Spoken: German, Turkish, Polish
Country: Germany
Webpage: http://www.sonnenhofberlin.de/
Telephone: (0049) 030 398 998 21

Kinderhospiz Sterntaler

Activities: Respite Care Service and sibling support programme
Dates: All year long
Target Population: Patients and siblings; serious illnesses
Age-Groups: 0 to 18 years old
Countries of Origin: Germany
Languages Spoken: German
Country: Germany
Webpage: http://www.kinderhospiz-sterntaler.de/
Email: info@kinderhospiz-sterntaler.de
Telephone: (0049) 0621 17 82 23

Kinderhospiz St. Nikolaus

Activities: Respite Care Service and sibling support programme
Dates: All year long
Target Population: Patients and siblings; serious illnesses
(e.g. metabolic diseases, diseases of the nervous system, genetic malformations)
Age-Groups: 0 to 18 years old
Countries of Origin: Germany
Languages Spoken: German
Country: Germany
Webpage: http://www.kinderhospiz-nikolaus.de
Email: info@kinderhospiz-nikolaus.de
Telephone: (0049) 08334 989 110

Kinderhospiz Mitteldeutschland

Activities: Respite Care Services
Dates: All year long
Target Population: Patients; serious illnesses (e.g. genetic abnormalities, inherited metabolic diseases such as MPS or NCL, severe diseases of the nervous system)
Age-Groups: 0 to 18 years old
Countries of Origin: Germany
Languages Spoken: German
Country: Germany
Webpage: http://www.kinderhospiz-mitteldeutschland.de/
Email: info@kinderhospiz-mitteldeutschland.de
Telephone: (0049) 3631 460 8910

Kinderhospiz Löwenherz

Activities: Respite Care Service with children and youth hospice
Dates: All year long
Target Population: Patients, families and siblings; incurably sick children
Age-Groups: children; and youth from 14 to 24 years old
Countries of Origin: Germany
Languages Spoken: German, English, Turkish
Country: Germany
Webpage: http://www.kinderhospiz-loewenherz.de/en
Email: letzing@kinderhospiz-loewenherz.de
Telephone: (0040) 04242 5789 - 0

Kinderhaus Nesthäkchen

Activities: Respite Care Services
Dates: All year long
Target Population: Patients; severely disabled
Age-Groups: Children
Countries of Origin: Germany
Languages Spoken: German
Country: Germany
Webpage: http://www.zuhause-gmbh.de/
Email: vondergathen@zuhause-gmbh.de
Telephone: (0049) 06120 978805

Kinderhospiz Bärenherz

Activities: Respite Care Service; outpatient service
Dates: All year long
Target Population: Patients, families; serious illnesses
Age-Groups: 0 to 18 years old
Countries of Origin: Germany
Languages Spoken: German
Country: Germany
Contact Person: Rainer Neubauer (Management Children's Hospice) - rainer.neubauer@baerenherz.de
Webpage: http://www.baerenherz-leipzig.de/
Email: info@baerenherz-leipzig.de
Telephone: (0049) 0341 35 01 63 0 

Kinderhospiz Bärenherz Wiesbaden

Activities: Respite Care Service
Dates: All year long
Target Population: Patients; serious illnesses
Age-Groups: 0 to 18 years old
Countries of Origin: Germany
Languages Spoken: German
Country: Germany
Contact Person: Claudia Langanki
Webpage: http://www.kinderhospiz-wiesbaden.de/
Email: claudia.langanki @ baerenherz-wiesbaden.de
Telephone: (0049) 0611 3601110-31

Kinder-Hospiz Sternenbrücke

Activities: Respite Care Service; family support and ambulatory services
Dates: All year long
Target Population: Patients and families; serious illnesses
Age-Groups: Children
Countries of Origin: Germany
Languages Spoken: German
Country: Germany
Webpage: http://www.sternenbruecke.de/
Email: info@sternenbruecke.de
Telephone: (0049) 040 819912 0 

Kinderhospiz Regenbogenland

Activities: Respite Care Service; sibling and family programmes
Dates: All year long
Target Population: Patients, siblings and parents; serious illnesses
Age-Groups: Children
Countries of Origin: Germany
Languages Spoken: German
Country: Germany
Webpage: http://www.kinderhospiz-regenbogenland.de/
Email: info@kinderhospiz-regenbogenland.de
Telephone: (0049) 0211 16 78 700

Kinder- und Jugendhospiz Balthasar

Activities: Respite Care Service
Dates: All year long
Target Population: Patients and siblings; serious illnesses (mostly metabolic or muscle disorders)
Age-Groups: 0 to 18 years old
Countries of Origin: Germany
Languages Spoken: German
Country: Germany
Webpage: http://www.kinderhospiz-balthasar.de/
Email: kontakt@kinderhospiz-balthasar.de
Telephone: (0049) 027619265-40

La Villa Rozerood

Activities: Respite Care
Dates: All year long
Target Population: Chronic Severe Diseases
Age-Groups: 0-18 years old
Countries of Origin: Belgium
Languages Spoken: French, Dutch
Country: Belgium
Contact Person: Danielle Huse
Directrice Villa Rozerood
Webpage: http://www.villarozerood.be/
Email: danielle.huse@villarozerood.be
Telephone: (0032) 58 42 20 24

RehabCare

Activities: Respite Care Services, Residential Services
Dates: All year long
Target Population: Patients, Families, Disabilities
Age-Groups: All
Countries of Origin: Ireland
Languages Spoken: English
Country: Ireland
Contact: http://www.rehab.ie/care/centrebased.aspx
Webpage: http://www.rehab.ie/
Email: info@rehab.ie
Telephone: (00353) 12057200

Séjour de Répit Familial - Maison Médicale Jean XXIII

Activities: Respite care services with therapeutic and medical follow-up
Dates: All year long
Target Population: Patients; Huntington disease, Amyotrophic lateral sclerosis, Multiple sclerosis, other rare or serious diseases generating severe disabilities
Age-Groups: Adults
Countries of Origin: France
Languages Spoken: French
Country: France
Contact Person: Sylvie HUBER - Social Worker
Webpage: http://www.maisonjean23.fr/srf.php
Email: shuber@maisonjean23.fr
Telephone: (0033) 0320888155

Societatea Romana Speranta

Activities: Respite Care Service; crisis centre and services promoting advocacy activities
Dates: All year long
Target Population: Patients and families; intellectual disabilities
Age-Groups: Children and Adults
Countries of Origin: Romania
Languages Spoken: Romanian
Country: Romania
Contact Person: Florin Geamanu (Coordinator)
Webpage: http://www.intermeding.com/speranta/site/index.php?id=index_e&v=e
Email: societatearomanasperanta@yahoo.com
Telephone: (0040) 256490245

Village Répit Familles®  la Salamandre

Activities: Adapted sports activities (boccia, darts, archery), informatics, videos, games, music and turistic tours
Dates: All year long
Target Population: Patients and families; rare diseases, neuromuscular and neurological diseases
Age-Groups: All ages
Countries of Origin: France; accepts families from abroad
Languages Spoken: French
Country: France
Contact Person: Mireille Boisseau
Webpage: http://www.afm-telethon.fr/maladies-neuromusculaires/concerne-par-la-maladie/l-afm-a-votre-service/reserver-un-lieu-d-accueil/le-village-repit-de-saint-georges-sur-loire
http://www.vrf.fr/VRF/web/node1_5316/les-villages 
Email:  lasalamandre@afm.genethon.fr 
Telephone: (0033) 241226060  or (0033) 557885885 - reservation platform

Village Répit Familles®  les Cizes

Activities: Zen area, well-being circuit, adapted activities (ski, mushing, nautique sports), cooking lessons
Dates: All year long
Target Population: Patients and families/carers; Physical disabilities
Age-Groups: All ages
Countries of Origin: France; accepts families from abroad
Languages Spoken: French
Country: France
Contact Person: Carole Bacheley
Webpage: http://www.vrf.fr/VRF/web/node1_5316/les-villages
Telephone: (0033) 384413100 or (0033) 557885885 - reservation platform

 

Village Répit Familles®  Touraine

Activities: Swimming pool, mini-golf, aqua gym and aqua bike and other sports and well-being activities. Table games, console games and other ludic activities
Dates: All year long
Target Population: Patients and families/carers; Alzheimer
Age-Groups: Adults (elderly)
Countries of Origin: France; accepts families from abroad
Languages Spoken: French
Country: France
Contact Person: Reservation platform (0033) (0)557885885
Webpage: http://www.vrf.fr/VRF/web/node1_5973/fiches-villages?idPub=node1_5886
Telephone: (0033) 557885885 - reservation platform
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