herenciageneticayenfermedad: EURORDIS - La voz de los Pacientes con Enfermedades Raras en Europa

miércoles, 24 de abril de 2013

EURORDIS - La voz de los Pacientes con Enfermedades Raras en Europa

EURORDIS - La voz de los Pacientes con Enfermedades Raraas en Europa

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List of services

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ASEM
Associação Spina Bífida e Hidrocefalia de Portugal
"Badger" Camp, Lithuanian Hemophilia Association
Barretstown
Bátor Tábor
Camps de Vacances Jeunes Adultes Myophates - ASRIM
Camps de Vacances pour Enfants Myophates - ASRIM
Centre Thermal
L'Envol
Dynamo Camp
Family Camp Federation of European Williams Syndrome
Hungarian Rett Syndrome Foundation
Muscular Dystrophy Ireland Respite Camps
Over the Wall
Summer Camp of Association Française des Hémophiles
Youth Exchange Federation of European Williams Syndrome
Yuppi

ASEM - Semana de Respiro Familiar

Activities: Summer Camp with Recreation, Sports and Educational Activities
Dates: Summer
Target Population: Children with Neuromuscular Diseases
Age-Groups: Children
Countries of Origin: Spain
Languages Spoken: Spanish
Country: Spain
Webpage: http://www.asem-esp.org/index.php/notas-de-prensa/883-colabora-con-la-semana-de-respiro-familiar-2012
Email: info@asem-esp.org
Telephone: (0034) 934516544

Associação Spina Bífida e Hidrocefalia de Portugal

Activities: Patient empowerment, Leisure Activities
Dates: Summer
Target Population: Patients, Spina Bifida
Age-Groups: Teenagers, Adults
Countries of Origin: Portugal
Languages Spoken: Portuguese
Country: Portugal
Contact Person: Luís Quaresma
Webpage: http://www.asbihp.pt/
Email: sede@asbihp.pt
Telephone: (00351) 218596768

"Badger" Camp, Lithuanian Hemophilia Association

Activities: Summer camp with recreational activities and training activities on self-medication
Dates: June-July
Target Population: Patients; Hemophilia
Age-Groups: 9 to 17 years old
Countries of Origin: Lithuania
Languages Spoken: Lithuanian
Country: Lithuania
Webpage: http://www.hemofilija.lt
Email: stovykla@hemofilija.lt
Telephone: (00370) 674 05 493

Barretstown

Activities: Residential Camp with several recreation activities
Dates: Residential Camp (March-November); Site hire for other groups available outside of camp dates
Target Population: Patients, Families, Serious Illnesses
Age-Groups: 7-17 years old
Countries of Origin: Ireland, UK, Spain, Sweden, Germany, Hungary, Italy, Russia, Greece, Cyprus, Poland
Languages Spoken: English; use of interpreters for other langauges
Country: Ireland
Contact Person: European Family Liaison Department
Webpage: http://www.barretstown.org/
Email: info@barretstown.org
Telephone: (00353) 45864115

Bátor Tábor

Activities: Camps, Sibling Camps, Family Programmes
Dates: April-November
Target Population: Patients, Familes, Cancer, Diabetes, JRA or Haemophilia and Families
Age-Groups: 7-18 years old
Countries of Origin: Hungary, Czech Republic, Slovakia, Poland
Languages Spoken: Hungarian, English
Country: Hungary
Webpage: http://www.batortabor.hu/
Email: batortabor@batortabor.hu
Telephone: (0036) 14573848
(0036) 14573840

Camps de Vacances Jeunes Adultes Myophates - ASRIM

Activities: Summer Camp with recreational activities and sports
Dates: Summer (10-18/08/2013)
Target Population: Patients; Myopathies
Age-Groups: 18 to 24 years old
Countries of Origin: Switzerland
Languages Spoken: French, Italian
Country: Switzerland
Contact Person: Pierre Froment
pierre-sin@wanadoo.fr
(0033) 680594016
Webpage: http://www.asrim.ch
Email: info@asrim.ch
Telephone: (0041) 24 420 78 00

Camps de Vacances pour Enfants Myophates - ASRIM

Activities: Summer Camp with recreational activities and sports
Dates: Summer (15-22/07/2013)
Target Population: Patients; Myopathies
Age-Groups: 0 to 18 years old
Countries of Origin: Switzerland
Languages Spoken: French, Italian
Country: Switzerland
Webpage: http://www.asrim.ch
Email: info@asrim.ch
Telephone: (0041) 24 420 78 00

Centre Thermal

Activities: Therapeutic camp with thermal treatments; programme of therapeutic patient education; courses on personal care activities and social-psychological workshops
Dates: 13th April to 3rd May
Target Population: Patients and carers; Ehlers Danlos Syndrome
Age-Groups: All ages
Countries of Origin: Any country
Languages Spoken: French, English
Country: France
Contact Person: Nelly Serre, President of ED Association
Webpages: www.ased.fr - www.chainethermale.fr/le-mont-dore.html
Email: contact@ased.fr - lemontdore@chainethermale.fr
Telephone: (0033) 649453774"

Dynamo Camp

Activities: Camps, Family Programmes
Dates: June-August
Target Population: Patients, serious or chronic illnesses in therapy or in post-hospitalisation convalescence
Age-Groups: 6-16 years old
Countries of Origin: Italy
Languages Spoken: Italian
Country: Italy
Webpage: http://www.dynamocamp.org/
Email: info@dynamocamp.org
Telephone: (0039) 57362171

L'Envol

Activities: Camps, Sibling Camps, Family Programmes
Dates: July-Agust
Target Population: Patients, Oncology, Haemotology, Prader Willi Syndrome
Age-Groups: 6-17 years old
Countries of Origin: France
Languages Spoken: French
Country: France
Webpage: http://www.lenvol.asso.fr
Email: contact.lenvol@lenvol.asso.fr
Telephone: (0033)144184493

Family Camp Federation of European Williams Syndrome

Activities: Games, sports, dance, concerts and other leisure activities; hydrotherapy, gymnastics with physiotherapy, sensomotor training, music therapy; sharing of good practices
Dates: Summer (07-14/07/2013)
Target Population: Patients; Williams Syndrome
Age-Groups: 0-99 years old
Countries of Origin: Hungary, Slovakia, Czech Republic, Poland
Languages Spoken: Hungarian, English
Country: Hungary
Contact Person: Beata Boncz
Webpage: v4fcamp.williams.org.hu
Email: info@williams.org.hu
Telephone: (0036) 17883881

Hungarian Rett Syndrome Foundation

Activities: Summer Camps; Possible for Parents to Participate
Dates: July-Agust
Target Population: Patients, Families, Rett Syndrome
Age-Groups: Children, Teenagers
Countries of Origin: Hungary (open to other countries)
Languages Spoken: Rett Syndrome patients (almost exclusively girls) ; all age groups
Country: Hungary
Contact Person: Danijela Szili
Webpage: http://www.rettszindroma.hu/
Email: szilidanijela@gmail.com
Telephone: mobile +36205427128 (online map)
Home + 361 7842017 (only for EURORDIS contacts)

Muscular Dystrophy Ireland Respite Camps

Activities: Residential Camps, Leisure Activities
Dates: March, May, June, July, August (5 Camps/year)
Target Population: Patients, Families, Muscular Dystrophy
Age-Groups: Children, Adults
Countries of Origin: Ireland
Languages Spoken: English
Country: Ireland
Contact Person: Youth / Respite Workers:
Sandra O’Donoghue, Eastern Region
Aisling Tarmey, West Region
Sinead Glennon, Midlands
Mary Rose O’Driscoll, South Region
Brian Kenna, North East
Lorraine Duffy, Dublin Office
Webpage: www.mdi.ie
Email: info@mdi.ie
Telephone: (00353) 6236414

Over the Wall

Activities: Camps, Sibling Camps
Dates: April-October
Target Population: Patients, Serious Illnesses
Age-Groups: 8-17 years old
Countries of Origin: United Kingdom
Languages Spoken: English
Country: United Kingdom
Webpage: http://www.otw.org.uk
Email: info@otw.org.uk
Telephone: (0044) 2392477110

Summer Camp of Association Française des Hémophiles

Activities: Educational, leisure and sports activities
Dates: Summer (13-27/07/2013)
Target Population: Patients; Hemophilia
Age-Groups: 9-14 years old
Countries of Origin: France
Languages Spoken: French
Country: France
Webpage: http://afh.asso.fr/
Email: info@afh.asso.fr
Telephone: (0033) 145677767"

Youth Exchange Federation of European Williams Syndrome

Activities: Games, sports, dance and other leisure activities
Dates: Summer (07-14/07/2013)
Target Population: Patients; Williams Syndrome
Age-Groups: 15-25 years old
Countries of Origin: Belgium, Finland, France, Germany, Ireland, Italy, Netherlands, Spain, United Kingdom
Languages Spoken: English (official language)
Country: Belgium
Contact Person: Paul Pyck
Webpage: http://fewscamp.williamsbeuren.be
Email: info@williamsbeuren.be
Telephone: (0034) 495592503

Yuppi Camping Motion Association

Activities: Therapeutic Recreation Activities
Dates: Summer
Target Population: Patients, Diabetes Type 1 (including rare form)
Age-Groups: 13-17 years old
Countries of Origin: Romania
Languages Spoken: Romanian, English, Hungarian
Country: Romania
Contact Person: Dora Aczel
Webpage: www.yuppicamp.ro
Email: yuppitabor@gmail.com
Telephone: (0040) 0726773656