List of services

Ågrenska
CRE Enfermedades Raras (Creer)
Eesti Agrenska Fond
Hôpital Marin d'Hendaye
Hospiz Stuttgart
Kinderhospiz Bethel
Kinderhospiz Sonnenhof
Kinderhospiz Sterntaler
Kinderhospiz St. Nikolaus
Kinderhospiz Mitteldeutschland
Kinderhospiz Löwenherz
Kinderhaus Nesthäkchen
Kinderhospiz Bärenherz
Kinderhospiz Bärenherz Wiesbaden
Kinder-Hospiz Sternenbrücke
Kinderhospiz Regenbogenland
Kinder- und Jugendhospiz Balthasar
La Villa Rozerood
RehabCare
Séjour de Répit Familial - Maison Médicale Jean XXIII
Societatea Romana Speranta
Village Répit Familles®  la Salamandre
Village Répit Familles®  les Cizes
Village Répit Familles®  Touraine

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, neuromuscular 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

Page created: 19/09/2012
Page last updated: 06/11/2014
 
 
La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rari, è un'iniziativa di EURORDISRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases