Dynamo Camp – un lugar donde los niños que padecen enfermedades graves o crónicas pueden ser simplemente niños
ASEM - Semana de Respiro FamiliarAssociação Spina Bífida e Hidrocefalia de PortugalActivities: 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.ptTelephone: (00351) 218596768 "Badger" Camp, Lithuanian Hemophilia AssociationActivities: 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.ltEmail: stovykla@hemofilija.ltTelephone: (00370) 674 05 493 BarretstownActivities: 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.orgTelephone: (00353) 45864115 Bátor TáborActivities: 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.huTelephone: (0036) 14573848 (0036) 14573840 Campamentos Verano Asociación Española para el Síndrome de Prader-WilliCampo de Férias da ApofenActivities: Leisure and pedagogical activities Dates: Summer (August) Target Population: Patients; Phenylketonuria and other metabolic diseases Age-Groups: Children (>8 years old) Countries of Origin: Portugal Languages Spoken: Portuguese Country: Portugal Contact Person: Rui Barros Silva Webpage: http://www.apofen.pt/Email: apofen@gmail.comTelephone: (00351) 960 231 590
Camps de Vacances Jeunes Adultes Myophates - ASRIMActivities: 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.chEmail: info@asrim.chTelephone: (0041) 24 420 78 00 Camps de Vacances pour Enfants Myophates - ASRIMActivities: 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.chEmail: info@asrim.chTelephone: (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: Spring (12/04 to 03/05/2013) 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.htmlEmail: contact@ased.fr - lemontdore@chainethermale.frTelephone: (0033) 649453774" Dynamo CampActivities: 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.orgTelephone: (0039) 57362171
L'EnvolActivities: 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.frEmail: contact.lenvol@lenvol.asso.frTelephone: (0033)144184493 Encuentro Nacional de Adolescentes con Cáncer, Federación Española de Padres de Niños con CáncerActivities: Leisure activities, rest and sharing of experiences in the scope of a programme of psychosocial therapy for teenagers Dates: Summer Target Population: Patients; Cancer Age-Groups: Teenagers Countries of Origin: Spain Languages Spoken: Spanish Country: Spain Contact Person: Almudena Docavo Webpage: http://cancerinfantil.org/Email: federacion@cancerinfantil.orgTelephone: (0034) 915572626 Family Camp Federation of European Williams SyndromeActivities: 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.huEmail: info@williams.org.huTelephone: (0036) 17883881 Hungarian Rett Syndrome FoundationActivities: Summer Camps; Possible for Parents to Participate Dates: Summer (30/06 to 05/07/2013) 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.comTelephone: mobile +36205427128 (online map) Home + 361 7842017 (only for EURORDIS contacts)
Loisirs Vacances Prader-Willi France
Activities: Family holidays with different leisure activities Dates: Spring (duration: 1 week) Target Population: Patients; Families Age-Groups: All ages Countries of Origin: France Languages Spoken: French Country: France Contact Person: Catherine FILLEBEEN Webpage: http://www.prader-willi.fr/loisirs-vacances/Email: rakata2@wanadoo.frTelephone: NA
Muscular Dystrophy Ireland Respite CampsActivities: 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.ieEmail: info@mdi.ieTelephone: (00353) 6236414 OIFE Youth MeetingActivities: Youth gathering with leisure activities Dates: Autumn (8-10/11/2013) Target Population: Patients; Osteogenesis imperfecta Age-Groups: Adolescents, young adults Countries of Origin: Europe Languages Spoken: English Country: Spain Contact Person: Anna Rossi, OIFE youth coordinator Webpage: http://www.oife.org/index.php/EN/youth-meetingsEmail: youth-coordinator@oife.orgTelephone: (0039) 3315994494 Over the WallActivities: 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.ukEmail: info@otw.org.uk Telephone: (0044) 2392477110
Séjours de répit en famille avec VML
Activities: Family respite weeks with recreational and leisure activities Dates: Summer (July) Target Population: Patients, families; Lysosomal diseases Age-Groups: Children, adults (family) Countries of Origin: France Languages Spoken: French Country: France Contact Person: Webpage: http://www.vml-asso.orgEmail: accueil@vml-asso.orgTelephone: (0033) 169754030
Stare Assieme-Be Togheter Summer CampActivities: Assisted family holiday with the support of specialised assistants: leisure activities, meetings, self-help groups Dates: Summer (2 weeks) Target Population: Patients; Siblings; Parents; Tuberous sclerosis Age-Groups: Children, Adults Countries of Origin: Italy Languages Spoken: Italian, English Country: Italy Contact Person: Giulia Mariani Webpage: www.sclerosituberosa.orgEmail: giulia-mariani@libero.it - info@sclerosituberosa.orgTelephone: (0039) 0665024216
Summer Camp of Association Française des HémophilesActivities: 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.frTelephone: (0033) 145677767 Vacanza in Romagna - Associazione Emofilici Talassemici di RavennaWaldpiraten-CampActivities: Educational, leisure and sports activities Dates: February-October Target Population: Patients; siblings; oncology Age-Groups: Children, Teenagers Countries of Origin: Germany Languages Spoken: German Country: Germany Contact Person: Gabriele Geib, Educational leadership Webpage: http://www.waldpiraten.de/Telephone: (0049) 06221-180466 Youth Exchange Federation of European Williams SyndromeActivities: 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.beEmail: info@williamsbeuren.beTelephone: (0034) 495592503 Yuppi Camping Motion AssociationActivities: 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.roEmail: yuppitabor@gmail.comTelephone: (0040) 0726773656 Page created: 19/09/2012
Page last updated: 28/10/2014 | 
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