Une association de patients solidaires, internationales, réseaux sociaux/Patient organization supportive, international, social networks

[Adam]

Une association de patients solidaires, internationales, réseaux sociaux. Partager, se soutenir, traitements, soutiens, échanges entre patients.
Aider les malades et leur famille atteints de maladies orphelines ou méconnues, dont l’autisme, la compression médullaire, la fibromyalgie, la malformation (ou syndrome) de Chiari, la myélinolyse, la sclérose latérale amyotrophique, la sclérose en plaque, le syndrome de fatigue chronique, la syringomyélie et d’autres à venir, suivant les demandes des adhérents. Helping patients and their families suffering from rare diseases or unknown, including autism, spinal cord compression, fibromyalgia, malformation (or syndrome) Chiari, myelinolysis, amyotrophic lateral sclerosis, multiple sclerosis, the syndrome chronic fatigue syndrome, syringomyelia and more to come, according to the requests of members.

https://amis-d-mom.forums-actifs.com/f1-echanger-partager-confronter-differentes-experiences-plusieurs-pathologies.

https://www.facebook.com/AMISDMOM

réseaux publiés sur le site de la fondation CHIARI SYRINGOMYELIE SCOLIOSE
à diffuser merci

ESPAÑA

1. Asociación de Enfermos de Chiari y patologías asociadas
www.asenchi.info

2. Associació d'Afectats de Siringomièlia
http://siringomielia.entitatsbcn.net

3. Asociación Nacional de Amigos de Arnold Chiari
www.infochiari.es

4. Asociación de Familaires y Afectados de Chiari y Patologías Asociadas en Barcelona
www.afacpa.org

5. ASMADES, Associació Malalts d’Escoliosi
www.escoliosis.org

6. Asociación Chiari y Siringomielia del Principado de Asturias (C.H.y.S.P.A.)
www.chyspa.org

7. Asosiación Escoliosis Castilla y León
www.adecyl.org

8. Asociación Malagueña de Escoliosis y Problemas de Espalda (AMEPE)
www.escoliosismalaga.blogspot.com

9. ASPAES – Asociación de Personas Afectadas de Escoliosis
www.aspaes.com


RESTO DEL MUNDO

1. Asociación Nacional de Amigos de Arnold Chiari. Hispanoamerica
www.infochiari.es/hispanoamerica.htm

2. Chiari Argentina para toda Hispanoamerica
www.chiariargentina.jimdo.com

3. AI.SAC.SI.SCO - Associazione Italiana Sindrome di Arnold Chiari I – Siringomielia – Scoliosi Filum Tomizzati
www.aisacsisco.org

4. Association Maladies Inconnues Solidaires et Maladies Orphelines ou Méconnues
www.amis-d-mom.forums-actifs.com

5. American Syringomyelia & Chiari Alliance Project
www.asap.org

6. Syringomyelia Arnold Chiari Association
www.saca-syringomyelia.org

7. World Arnold Chiari Malformation Association
www.pressenter.com/~wacma

8. The Scoliosis Association, INC. An international support and information organization
www.scoliosis-assoc.org

9. The Scoliosis Association of the United Kingdom
www.sauk.org.uk

10. The Scoliosis Association of Australia
www.scoliosis.org.au

11. The scoliosis support group of Queensland
http://www.scoliosissuppport.org.au






PATOLOGÍAS ASOCIADAS Y ENFERMEDADES RARAS

1. Federación española de enfermedades raras
www.enfermedades-raras.org

2. The Spinecare Foundation (support for children with special injuries and disorders)
http://www.spinecarefoundation.org

3. Asociación española de malformaciones cráneo-cervicales
www.aemc-chiari.com

4. The Voice of Rare Disease Patients in Europe
www.eurordis.org

5. Sällsynta diagnoser (Rare Diseases Sweden)
www.sallsyntadiagnoser.se

6. Asociatiei Boli Genetice Rare (Romanian Nat. Alliance for Rare Diseases)
www.apwromania.ro

7. Federaçao Portuguesa de Doenças Raras (Portuguese Rare Diseases Federation)
doricad@yahoo.com

8. Federazione Italiana Malattie Rare - UNIAMO FIMR (Italian Rare Diseases Federation)
www.uniamo.org

9. Genetic and Rare Disorders Organisation. Dublin, Ireland
www.grdo.ie

10. Πανελλήνια Ένωση Σπανίων Παθήσεων (Greek Alliance for Rare Diseases)
http://www.pespa.gr/en/pespa_en.htm

11. Национален алианс на хората с редки болести. (National Alliance of People with Rare Diseases. Sofia, Bulgaria)
tomov@gaucherbg.org

12. Rare Disorders Belgium
www.rd-b.be

13. Всероссийское Общество Инвалидов (Russian Society of Disabled people)
www.voi.ru

14. Всероссийский союз пациентов (Russian Patients' Organisation)
www.patients.ru

Hi to all,
        My name is Ellie and I'm new to the forum. I joined the forum because I need some advice, I would like to join one of these associations for many reasons. This is my first post here, I hope this is a friendly forum and you help me.