Gersed

Groupe d'Etude et de Recherche du Syndrome Ehlers-Danlos

Actualité

3eme colloque international francophone
« Les traitements du syndrome d’Ehlers-Danlos (SED) » du samedi 25 mars 2017
Université Paris Descartes salles Giroud 45, rue des Saints Pères, 75006 Paris
Programme - inscription


Nouveau : SEDENLIGNE - Web-Formation sur le SED pour les professionnels de santé - Inscription sur :  sedenligne@gersed.com
Informations ici


En collaboration avec les médecins du GERSED, la consultation du professeur HAMONET se poursuit au Centre ELLA Santé
29 Bis rue d’ASTORG
75008 Paris
tel 01 43 12 31 00


2eme colloque international francophone
« Les traitements du syndrome d’Ehlers-Danlos (SED) » du samedi 19 mars 2016 à la Faculté de médecine de Creteil.
Lire le compte-rendu
voir vidéo


Déclaration des médecins du monde spécialistes du S.E.D. : SEDACTION


1er colloque international francophone
« Les traitements du syndrome d’Ehlers-Danlos (SED) » du samedi 7 mars à la Faculté de médecine de Creteil.
Lire le compte-rendu.


La clinique au quotidien du syndrome d’Ehlers-Danlos :

Bibliographie - Liens

Voir également Liens Utiles

Publications écrites

  • Justine Hugon-Rodin, Géraldine Lebègue, Stéphanie Becourt, Claude Hamonet and Anne Gompel. Gynecologic symptoms and the influence on reproductive life in 386 women with hypermobility type ehlers-danlos syndrome: a cohort study : Orphanet Journal of Rare Diseases (2016) 11:124
  • Terry RH, Palmer ST, Rimes KA, Clark CJ, Simmonds JV, Horwood JP. Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care. Fam Pract. 2015 Jun;32(3):354-8.
  • Grahame R, Hakim AJ. Arachnodactyly--a key to diagnosing heritable disorders of connective tissue. Nat Rev Rheumatol. 2013 Jun;9(6):358-64.
  • Vanakker O, Callewaert B, Malfait F, Coucke P. The Genetics of Soft Connective Tissue Disorders. Annu Rev Genomics Hum Genet. 2015 Aug 24;16:229-255.
  • Challal S, Minichiello E, Funalot B, Boissier MC. Ehlers-Danlos syndrome in rheumatology: Diagnostic and therapeutic challenges. Joint Bone Spine. 2015 May 21. pii: S1297-319X(15)00088-3. doi: 10.1016/j.jbspin.2015.04.002.
  • Fikree A, Aziz Q, Grahame R. (2013) Joint hypermobility syndrome. Rheum Dis Clin N Am 39:419–30.
  • Colombi M, Dordoni C, Chiarelli N, Ritelli M. (2015) Differential Diagnosis and Diagnostic Flow Chart of Joint Hypermobility Syndrome/Ehlers–Danlos Syndrome Hypermobility Type Compared to Other Heritable Connective Tissue Disorders. Am J Med Genet 169C:6-22.
  • Berglund et al. Self-reported quality of life, anxiety and depression in individuals with Ehlers-Danlos syndrome (EDS): a questionnaire studyBMC Musculoskeletal Disorders (2015) 16:89.
  • Castori M, Morlino S, Pascolini G, Blundo C, Grammatico P. (2015) Gastrointestinal and Nutritional Issues in Joint Hypermobility Syndrome/Ehlers–Danlos Syndrome, Hypermobility Type. Am J Med Genet 169C:54-75.
  • Castori M, Morlino S, Dordoni C, Celletti C, Camerota F, Ritelli M, Morrone A, Venturini M, Grammatico P, Colombi M. (2012) Gynecologic and obstetric implications of the joint hypermobility syndrome (a.k.a. Ehlers-Danlos syndrome hypermobility type) in 82 Italian patients. Am J Med Genet 158A:2176-82.
  • Hamonet C, Gompel A, Mazaltarine G, Brock I, Baeza-Velasco C, Zeitoun JD, Bienvenu B. (2015) Ehlers-Danlos, syndrome or disease ? J Syndromes 2(1)5.
  • Bulbena A, Gago J, Pailhez G, Sperry L, Fullana MA, Vilarroya O. Joint hypermobility syndrome is a risk factor trait for anxiety disorders: a 15-year follow-up cohort study. Gen Hosp Psychiatry 2011;33:363–70.
  • Baeza-Velasco C, Pailhez G, Bulbena A, Baghdadli A. (2015) Joint hypermobility and the heritable disorders of connective tissue: Clinical and empirical evidence of links with psychiatry. General Hospital Psychiatry 37:24-30.
  • Eccles JA, Beacher FD, Gray MA, Jones CL, Minati L, Harrison NA, et al. Brain structure and joint hypermobility: relevance to the expression of psychiatric symptoms. Br J Psychiatry 2012;200:508–9.
  • Bulbena A, Pailhez G, Bulbena-Cabré A, Mallorqui-Bagué N, Baeza-Velasco C. (2015) Joint hypermobility, anxiety and psychosomatics: two and a half decades of progress toward a new phenotype. Advances in Psychosomatic Medicine. 34:143-157.
  • Gazit Y, Nahir AM, Grahame R, Jacob G. Dysautonomia in the joint hypermobility syndrome. Am J Med 2003;115:33–40.
  • Eccles JA, Beacher FD, Gray MA, Jones CL, Minati L, Harrison NA, et al. Brain structure and joint hypermobility : relevance to the expression of psychiatric symptoms. Br J Psychiatry 2012;200:508–9.
  • Gazit Y, Nahir AM, Grahame R, Jacob G. Dysautonomia in the joint hypermobility syndrome. Am J Med 2003;115:33–40.
  • Baeza-Velasco C, Gely-Nargeot MC, Bulbena A, Bravo JF. Joint hypermobility syndrome: problems that require psychological intervention. Rheumatol Int 2011;31:1131–6.
  • Grahame R. Hypermobility and the heritable disorders of the connective tissue. In: Keer R, Grahame R, editors. Hypermobility syndrome, recognition and management for physiotherapist. New York: Butterworth Heinemann; 2003. p. 15–25.
  • Hakim A, Grahame R. Joint hypermobility. Best Pract Res Clin Rheumatol 2003;17: 989–1004.
  • Beighton P, Solomon L, Soskolne C. Articular mobility in an African population. Ann Rheum Dis 1973;32:413–8.
  • Fikree A, Aziz Q, Grahame R. Joint hypermobility syndrome. Rheum Dis Clin N Am 2013;39:419–30.
  • Grahame R, Bird HA, Child A. The revised (Brighton 1998) criteria for the diagnosis of benign joint hypermobility syndrome (BJHS). J Rheumatol 2000;27:1777–9.
  • Bravo J, Wolff C. Clinical study of hereditary disorders of connective tissues in a Chilean population. Joint Hypermobility Syndrome and vascular Ehlers-Danlos syndrome. Arthritis Rheum 2006;54:515-523.
  • Callewaert B, Malfait F, Loeys B, De Paepe A. Ehlers–Danlos syndrome and Marfan syndrome. Best Pract Res Clin Rheumatol 2008;22:165–89.
  • Beighton P, De Paepe A, Steinmann B, Tsipouras P,Wenstrup RJ. Ehlers–Danlos syndromes : revised nosology, Villefranche, 1997. Ehlers–Danlos National Foundation (USA) and Ehlers–Danlos Support Group (UK). Am J Med Genet 1998;77:31–7.
  • Tinkle BT, Bird HA, Grahame R, Lavallee M, Levy HP, Sillence D. The lack of clinical distinction between the hypermobility type of Ehlers–Danlos syndrome and the joint hypermobility syndrome (a.k.a. hypermobility syndrome). Am J Med Genet A 2009;149A:2368–70.
  • Pepin M, Schwarze U, Superti-Furga A, Byers PH. Clinical and genetic features of Ehlers–Danlos syndrome type IV, the vascular type. N Engl J Med 2000;342: 673–80.
  • Baeza-Velasco C, Gély-Nargeot MC, Pailhez G. Bulbena A. (2013). Joint Hypermobility and sport: a review of advantages and disadvantages. Current Sports Medicine Reports 12(5), 1-5.
  • Hamonet C, Gompel A, Raffray Y, Zeitoun JD, Delarue M, Vlamynck, E, Haidar R, Mazaltarine G. (2014) Multiple pains in Ehlers-Danlos syndrome. Description and proposal of a therapy protocol. Douleurs 15:264-277.
  • Bathen T1, Hångmann AB, Hoff M, Andersen LØ, Rand-Hendriksen S. (2013) Multidisciplinary treatment of disability in Ehlers-Danlos syndrome hypermobility type/hypermobility syndrome: A pilot study using a combination of physical and cognitive-behavioral therapy on 12 women. Am J Med Genet 161A:3005-11.
  • Castori M. Joint hypermobility syndrome (a.k.a. syndrome hypermobility type): An update critique. G Ital Dermatolo Venereol 2013;148:13-36.
  • Knight I. The role of narrative medecine in the managament of joint hypermobility syndrome/Ehlers-Danlos syndrome, Hypermoblity type. American Journal of Medical genetics 2015;169C :123-129.
  • Donkervoort S, Bonnemann CG, Loeys B, Jungbluth H, Voermans NC. The neuromuscular differential diagnosis of joint hypermobility. Am J Med Genet C Semin Med Genet. 2015 Mar;169C(1):23-42.
  • Puledda F, Viganò A, Celletti C, Petolicchio B, Toscano M, Vicenzini E, Castori M, Laudani G, Valente D, Camerota F, Di Piero V. A study of migraine characteristics in joint hypermobility syndrome a.k.a. Ehlers-Danlos syndrome, hypermobility type. Neurol Sci. 2015 Aug;36(8):1417-24.
  • Castori M, Voermans NC. Neurological manifestations of Ehlers-Danlos syndrome(s): A review. Iran J Neurol. 2014 Oct 6;13(4):190-208.
  • Bogni M, Bassotti A, Leocata G, Barretta F, Brunani A, Bertazzi PA, Riboldi L, Vigna LM. Workers with Ehlers-Danlos syndrome: indications for health surveillance and suitable job assignment]. Med Lav. 2015 Jan 9;106(1):23-35.
  • Scheper MC, de Vries JE, Verbunt J, Engelbert RH. Chronic pain in hypermobility syndrome and Ehlers-Danlos syndrome (hypermobility type): it is a challenge. J Pain Res. 2015 Aug 20;8:591-601.

Evenements

Colloque international

Troisième colloque international francophone sur les traitements du syndrome d’Ehlers-Danlos (SED) le samedi 25 mars 2017 à Paris
Voir Programme et fiche d'inscription
Colloque Ehlers Danlos Paris2017 affiche

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