Healthcare Professionals Day – FR

Série EDS ECHO Gestion de la douleur : une perspective européenne – journée pour les professionnels de la santé

Bienvenue à la session 1 – Dr. Helen Cohen

Dr Cohen is a Consultant in Rheumatology and Chronic Pain at the Royal National Orthopaedic Hospital, Stanmore, U.K. She graduated from the University of Wales College of Medicine and completed her PhD at the Royal National Hospital for Rheumatic Diseases, Bath. She leads the Hypermobility and CRPS Rehabilitation Programmes, working closely with allied health professionals. Her interests include EDS/hypermobility, fibromyalgia and CRPS among other chronic, difficult-to-explain pain syndromes. 

Histoire de la douleur: Progression de l’enfance à l’âge adulte: expériences d’une clinique italienne – Dr. Marco Castori

Marco Castori is the Chief of the Division of Medical Genetics at the IRCCS-Casa Sollievo della Sofferenza Hospital in San Giovanni Rotondo (Foggia, Italy). He is a Clinical/Medical Geneticist and obtained his PhD with a project on the Ehlers-Danlos syndromes and related disorders. Joint hypermobility and hereditary connective tissue disorders are his major research topics. Additional research focuses include intellectual disability/multiple malformation syndromes and hereditary skin disorders. 

Les mécanismes de la douleur: Une revue de littérature internationale – Prof. Fransiska Malfait

After obtaining her university degree as a medical doctor in 2000, Fransiska Malfait performed a pre-doctoral training on the phenotypic characterization and identification of novel genetic defects in several subtypes of the Ehlers-Danlos syndrome (EDS). This resulted in a series of peer-reviewed publications and a PhD degree in medical sciences, with a thesis entitled, “New insights in the molecular pathogenesis of the Ehlers-Danlos syndrome.” Simultaneously, Dr. Malfait was also trained as a clinical geneticist and became involved in the genetic counseling and clinical care of patients with heritable connective tissue disorders (HCTD). Impressed by the chronic musculoskeletal problems and pain that patients with these conditions suffer from, she decided to further specialize in rheumatology, a degree she obtained in 2009. Her training as both a clinical geneticist and rheumatologist provided her the opportunity to develop a unique expertise in the diagnosis and management of patients with these conditions. 

Q&A

Bienvenue à la session 2 – Prof. Lara Bloom

Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic and invisible diseases, specialising in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Before joining the Ehlers-Danlos Society Lara ran EDS UK from 2010-2015. 

Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert. 

Lara regularly works with umbrella organisations lobbying at government level internationally. In addition to her role as President and CEO of The Ehlers-Danlos Society, she is the Global Ambassador for Global Genes and Advocacy Committee Member for Rare Diseases International, Co-Investigator in the NIHR CONCORD: CO-ordiNated Care Of Rare Diseases, Expert Advisor in the European Reference Network Groups RECONNECT & VASCERN, Expert Advisor to PARADIGM & EPF, Working Group Member of the GenTAC Alliance Patients, Families, and Clinicians, and a Patient Group Consultative Forum Member for the Medicines and Healthcare Products Regulatory Agency.    

In 2016 Lara completed expert-level training in medicines research and development and became a fellow of the European Patients Academy EUPATI. 

Lara played a key role in the recent international effort to re-classify EDS and create management and care guidelines. She was a published author on the subsequent classification publication in the American Journal of Medical Genetics (AJMG) March 2017 and serves on the steering committee of the International Consortium for EDS and Related Disorders. 

Commemorating ten years in the field of patient advocacy for the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), chronic illnesses, and rare diseases, Lara was officially appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, on March 11, 2020. 

La gestion pharmacologique de la douleur: approche d’une clinique européenne – Dr. Hani Hattar

Dr. Hani Hattar, senior consultant at Pain Unit, Västerviks Hospital in Sweden. I am a specialist in pain medicine, geriatrics and rehabilitation medicine. I have been working with EDS/HSD since 1993. My interest is management and rehabilitation in EDS/HSD. 

Gestion non pharmacologique de la douleur: une perspective française – Dr. Isabelle Brock

Dr. Isabelle Brock performs clinical research and consults EDS patients at QoLify (Quality of Life improvements for you), 3 Pillars Therapeutics and ClinicalParadigms.  Researcher at Indiana University Dep of Medical and Molecular Genetics. 7 years of experience in EDS research including opening clinics solely dedicated to EDS and its comorbidities. Member of the International Consortium; Co-Chair GERSED, France, honorary president GERSED, Belgium; CSO EDS Initiative Deutschland, scientific board FRAME, NYC.

Q&A

Bienvenue à la session 3 – Prof. Lara Bloom

Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic and invisible diseases, specialising in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Before joining the Ehlers-Danlos Society Lara ran EDS UK from 2010-2015. 

Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert. 

Lara regularly works with umbrella organisations lobbying at government level internationally. In addition to her role as President and CEO of The Ehlers-Danlos Society, she is the Global Ambassador for Global Genes and Advocacy Committee Member for Rare Diseases International, Co-Investigator in the NIHR CONCORD: CO-ordiNated Care Of Rare Diseases, Expert Advisor in the European Reference Network Groups RECONNECT & VASCERN, Expert Advisor to PARADIGM & EPF, Working Group Member of the GenTAC Alliance Patients, Families, and Clinicians, and a Patient Group Consultative Forum Member for the Medicines and Healthcare Products Regulatory Agency.    

In 2016 Lara completed expert-level training in medicines research and development and became a fellow of the European Patients Academy EUPATI. 

Lara played a key role in the recent international effort to re-classify EDS and create management and care guidelines. She was a published author on the subsequent classification publication in the American Journal of Medical Genetics (AJMG) March 2017 and serves on the steering committee of the International Consortium for EDS and Related Disorders. 

Commemorating ten years in the field of patient advocacy for the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), chronic illnesses, and rare diseases, Lara was officially appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, on March 11, 2020. 

Rôle de la physiothérapie et de l’ergothérapie pour les SED et TSH (HSD) – Dr. Lies Rombaut

am a physiotherapist and senior researcher (PhD) in the field of HCTD with a special interest for the Ehlers-Danlos syndromes. I am working at the center for Medical Genetics at Ghent University Hospital, Belgium. In clinics, I am involved in diagnostics of HCTD and I provide physiotherapeutic advice for patients with connective tissue disordersMy research currently focuses on the natural history, pain and arthrosis in patients with Ehlers-Danlos syndromes. 

Rééducation et douleur: Perspective d’un patient Anglais hospitalisé – Dr. Helen Cohen

Dr Cohen is a Consultant in Rheumatology and Chronic Pain at the Royal National Orthopaedic Hospital, Stanmore, U.K. She graduated from the University of Wales College of Medicine and completed her PhD at the Royal National Hospital for Rheumatic Diseases, Bath. She leads the Hypermobility and CRPS Rehabilitation Programmes, working closely with allied health professionals. Her interests include EDS / hypermobility, fibromyalgia and CRPS among other chronic, difficult-to-explain pain syndromes. 

Q&A

Bienvenue à la session 4 – Prof. Lara Bloom

Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic and invisible diseases, specialising in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Before joining the Ehlers-Danlos Society Lara ran EDS UK from 2010-2015. 

Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert. 

Lara regularly works with umbrella organisations lobbying at government level internationally. In addition to her role as President and CEO of The Ehlers-Danlos Society, she is the Global Ambassador for Global Genes and Advocacy Committee Member for Rare Diseases International, Co-Investigator in the NIHR CONCORD: CO-ordiNated Care Of Rare Diseases, Expert Advisor in the European Reference Network Groups RECONNECT & VASCERN, Expert Advisor to PARADIGM & EPF, Working Group Member of the GenTAC Alliance Patients, Families, and Clinicians, and a Patient Group Consultative Forum Member for the Medicines and Healthcare Products Regulatory Agency.    

In 2016 Lara completed expert-level training in medicines research and development and became a fellow of the European Patients Academy EUPATI. 

Lara played a key role in the recent international effort to re-classify EDS and create management and care guidelines. She was a published author on the subsequent classification publication in the American Journal of Medical Genetics (AJMG) March 2017 and serves on the steering committee of the International Consortium for EDS and Related Disorders. 

Commemorating ten years in the field of patient advocacy for the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), chronic illnesses, and rare diseases, Lara was officially appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, on March 11, 2020. 

Tissus conjonctifs et santé de la personne dans son ensemble – Dr. Helene Langevin

Helene Langevin, M.D., is the Director of the NIH National Center for Complementary and Integrative Health. She was previously Director of the Osher Center for Integrative Medicine at Harvard Medical School. Dr. Langevin’s research has centered on the role of connective tissue in musculoskeletal pain. Dr. Langevin received an M.D. degree from McGill University, Montreal, post-doctoral studies at the MRC Neurochemical Pharmacology Unit in Cambridge, England, and Johns Hopkins Hospital. 

Q&A

Bienvenue à la session 5 – Dr. Karelle Benistan

Member of the non-vascular EDS National Reference Center, certified by the French Ministry of Health. 

General Practitioner by background, with Post Graduate in Medical Genetics and Pain Management. 

Management of a cohort of 3000 EDS or HSD patients, with 18 years of experience. National expert for EDS diagnosis. 

Investigator for several clinical trials on EDS. 

Scientific advisors for French patients’ associations. 

Member of the International Consortium on EDS and related disorders.

Douleurs gastro-intestinales chez les SED et TSH (HSD) – Dr. Benoit Coffin

Chief of the Gastroenterology Unit, AP-HP Hopital Louis Mourier, Colombes (Paris area), France. 
Teaching professor in Gastroenterology, Université de Paris, Paris, France.
Main topic of expertise: functional bowel disorders and severe gut motility disorders. 
French National Healthcare Network for patients with non-vascular Ehlers Danlos Syndrome (director: Dr K Benistan), Paris area referring center for patients with digestive symptoms.

Douleurs pelviennes chez les SED et TSH (HSD) – Prof. Vik Khullar

Prof Vik Khullar is a subspecialist consultant urogynaecologist at St Mary’s Hospital, Imperial College Healthcare NHS Trust, London and Professor of Practice (Urogynaecology) for the Faculty of Medicine at Imperial College, London, United Kingdom.  

Prof Khullar’s clinical interests include quality-of-life issues, pelvic pain, Ehlers Danlos syndrome and its effect on the bladder and pelvis, surgical treatment of urinary incontinence and vaginal prolapse, and topics related to urodynamics. 

Syndromes de piégeage vasculaire: expériences d’Allemagne – Prof. Wilhelm Sandmann

Prof. Emeritus, Medical Faculty Heinrich-Heine Univ. of Düsseldorf, former Director Dept. Of  Vasc.Surg. and Kidney TX. Univ.of Düsseldorf. Founding member European.Soc.Vasc.Surgery; founding member German Soc. Vasc Surg., Member(hon) Soc.VascSurg.USA: Main interests. re -constructive (open)art.and venous Vasc. Surgery; Vasc. Surg. in infants, children and adolescents for hypoplasia and disorders: Surgery for compression syndromes, vasc. in rare diseases(hEDS, HSD, Marfan, Loetz-DIETZ S., FMD) 

La gestion des céphalées – Dr. Manjit Matharu

Dr. Manjit Matharu is an Associate Professor at UCL Queen Square Institute of Neurology and Honorary Consultant Neurologist at The National Hospital for Neurology and Neurosurgery, London, UK. He is the Clinical and Academic Lead of the Headache and Facial Pain Group at The National Hospital for Neurology and Neurosurgery and UCL Queen Square Institute of Neurology, respectively. Dr. Matharu is a member of the Headache and Pain subcommittee of the Association of British Neurologists. 

Q&A

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