Le comité de patients
Il a pour vocation d’améliorer l’information, l’accueil, l’écoute et la prise en charge globale (conditions d’attente, conditions d’hospitalisation, soutien aux personnes hospitalisées, vie quotidienne…). En lien avec la maison des associations, son rôle est de favoriser votre expression ainsi que celle de vos proches auprès des soignants. Le comité peut solliciter l’IUCT Oncopole pour tout sujet qu’il estimerait pertinent de mettre à l’étude concernant la prise en charge des malades et de leurs proches. Son rôle est consultatif et les membres sont bénévoles. Les informations qui lui sont transmises sont soumises au respect du secret professionnel. Les avis et analyses du comité de patients sont libres et indépendants.
Patient associations
« Vivre comme avant » ("Living like before") offers an on-demand meeting space for women who have had breast surgery.
Tel.: (+33) 05 61 40 85 67
The Red Cross visits the clinical services on Thursdays from 15:00 to 16:30 and offers a large selection of books.
Present on site on Thursdays between 14:00 and 16:30.
L'ASSO (The Association of South-West Region stoma patients) offers to meet people with gastrointestinal or urinary stomas. Present at the Institute every Thursday from 12:30 to 13:30.
Tel.: (+33) 05 61 23 65 99
ELIDAN proposes support regarding oral cavity rehabilitation after an ENT surgery.
Tel. : (+33) 07 60 93 97 20
A.S.P (Toulouse Midi-Pyrénées Association for the Development of Palliative Care) offers its caring presence to patients throughout their treatment program. Present at the Institute from Tuesday to Saturday.
http://www.asp-toulouse.fr
Email: asp.toulouse@free.fr - Tel.: (+33) 05 61 12 43 43
"Les Blouses Roses" (The Pink Coats) proposes entertainment or art activities to take patients' and carers' minds off things.
https://lesblousesrosesdetoulouse.com
Facebook : les blouses roses de Toulouse
Tel.: (+33) 09 50 31 33 14
The association of visitors for hospitalized patients (V.M.E.H.) visits those who wish to be visited in the different hospital departments.
Tel.: (+33) 06 11 37 00 43
"La vie entre les mains" (Life in Your Hands) provides support for the work of the Institute by organizing exhibitions and offering beauty treatments to hospitalized patients or outpatients.
www.lavieentrelesmains.com
Email: Lavieentrelesmains@iuct-oncopole.fr - Tel.: (+33) 05 31 15 55 51
L'Association des laryngectomisés et des mutilés de la voix du Sud-Ouest (Association of South-West region patients with laryngectomies and damaged voices) provides support to patients undergoing radiotherapy treatment, working with the Institute's speech therapist.
Email: almv.so.lr@orange.fr - Tel.: (+33) 09 64 33 20 84
"La Ligue contre le cancer" (The Anti-cancer League) – Committee of the Haute-Garonne
Located in the Oncopole communal house, it offers the services of a large number of professionals and a wide range of documentation.
http://www.liguecancer31.fr
Tel.: (+33) 05 61 54 17 17
Cancer support France Gascony gives support and help (information about cancer, visits, etc.) to English speakers whatever their country of origin.
http://www.cancersupportfrance.org
Mail : gacony-contact@cancersupportfrance.org - Tél. : 06 83 17 99 88 ou 06 27 69 62 28 (local helpline)
"Vivre sans thyroïde" (Living without a thyroid gland) provides information and support to recently diagnosed patients, whatever thyroid disease they are suffering from. The association offers a discussion forum.
www.forum-thyroide.net
Email: info@forum-thyroide.net - Tel: (+33) 05 61 86 73 74
"L'Association des patients porteurs de tumeurs endocrines diverses" (APTED) (Association of patients with different endocrine tumors) informs and accompanies patients with endocrine tumors and their relatives. The association supports research work.
www.apted.fr
Tel. : 05 61 24 10 61 (Alain Marsan)
"L'association Française des Malades du Myélome Multiple (AF3M) (The French Association for Multiple Myeloma Patients) provides information, assistance and support to patients and their families. It represents the rights of myeloma patients nationally with a view to improving the care of patients and their quality of life, and to developing research.
www.af3m.org
Email: af3m.araymond@gmail.com - Tel.: (+33) 06 49 40 91 16 and 05 61 63 03 37
"L'association pour la Recherche sur les Tumeurs Cérébrales" (ARTC) (Association for Research on Brain Tumors) supports patients and the families of patients. It participates in the development of research in neuro-oncology (advances in basic, clinical and therapeutic knowledge in the field of brain tumors).
www.artc.asso.fr
Email: artc.toulouse@orange.fr - Tel.: (+33) 06 09 74 75 52
CHeer uP ! supports young people with cancer between 15 and 29 years of age in creating and fulfilling a project dear to their heart. To make this a reality, CHeer uP! calls on the skills of student volunteers and a network of experts. A pair of rotating volunteers pays regular visits (one to several times a week) to the young people in various departments. Volunteers also lead workshops or various events within the service or hospital for all the young people concerned.
www.cheer-up.fr
Email : presidentca@cheer-up.fr - Tel.: (+33) 06 79 22 15 16
The task of "France Lymphome Espoir" (France Lymphoma Hope) is to inform, educate and support patients with lymphomas and/or their relatives. It plays a part in promoting research and improving patient quality of life by awarding annual scholarships according to projects. It runs a discussion forum on its website, publishes patient information brochures validated by a scientific committee formed by a multidisciplinary team of physicians and paramedical professionals specialized in hematology.
www.francelymphomeespoir.fr
Tel.: (+33) 01 42 38 54 66
"L'association des Greffés de la Moelle Osseuse de Midi-Pyrénées" (AGMOMP) (The Midi-Pyrénées Association for Bone Marrow Transplant patients) offers visits and a weekly on-site presence for patients who have had a transplant and patients with hematological diseases. It raises awareness regarding blood, platelet and bone marrow donation, and provides research assistance.
http://agmomp.fr/
Mail : karinepurpan@msn.com karine.vedere@wanadoo.fr - Tél. : 06 61 07 13 14
"Sport et cancer" (Sport and Cancer)
Adequate physical activity helps overcome fatigue and improve quality of life.
"L'association CAMI Sport et cancer" (CAMI Sport and Cancer) offers adapted sport and physical exercise classes.
Email: cami.31@sportetcancer.com
The Sporeva Association offers exercise classes to people with cancer.
Email: sporeva31@yahoo.fr - Tel.: (+33) 06 71 01 71 40
"Escale Forme"
The Haute-Garonne Anticancer League offers regular physical exercise classes during and after treatments. The classes are given at the Oncopole communal house.
Information and registration: (+33) 05 61 54 17 17
DragonBoat Toulouse
Created in 2011, the association fosters sport and health through its section "DragonLadies" proposed to breast cancers patients and former patients.
http://dragonboat-toulouse.fr
Tel. : (+33) 06 88 93 17 26 (Françoise)
There are also other associations that provide information for patients and families:
AMARAPE, Association of rare diseases of the peritoneum (Lyon)
www.amarape.com
Tel.: (+33) 04 78 86 59 84
IMAGYN, Initiative of patients suffering from gynecological cancers (Paris)
Tel.: (+33) 01 42 34 83 23
SOS Desmoïde, association of persons affected by a desmoid tumor (Angers)
www.sos-desmoide.asso.fr
Email: association.sos-desmoide@laposte.net
Info Sarcomas, association providing information on sarcomas (Rennes)
www.infosarcomes.org
Email: info@sarcomes.org
"Ensemble contre le GIST" (Together against GIST), French association of GIST patients (Rennes)
www.ensemblecontrelegist.com
Email: ensemblecontrelegist@yahoo.fr