National Register Of Health Care Providers
Be part of our national register of health care providers to help assist those New Zealanders living with Ehlers Danlos Syndrome.
We often hear of EDS patients who are struggling with a diagnosis, or trying to find the right practitioner who can help. We welcome any medical professionals who can give the Society guidance on where patients can go for knowledge, and care of their condition.
EDS patients often require a range of practitioners to help mange their health so any recommended services in the fields of genetics, rheumatology, general practice, physiotherapy, osteopathy or surgery would be beneficial.
Please email us on contact@ehlers-danlos.org.nz with the name of your practice, clinic location and contact details, and we can add you to our growing national register.
Please find the 2017 New York Criteria here. This criteria provides health care professionals with the latest EDS information, and can help you diagnose patients, or help direct them to the most appropriate service for their condition.
Resources For Medical Professionals
We have two copies of Kevin Muldowney’s “Living Life To The Fullest With Ehlers-Danlos Syndrome” available for health care professionals to borrow to help set up a physical therapy plan for EDS patients. Kevin Muldowney, MsPT, has been treating people with Ehlers-Danlos Syndrome since 2005 and has developed this exercise protocol to help stabilise the many joint subluxations/dislocations associated with EDS. This book is intended for the person diagnosed with EDS to both inform them about the healthcare team needed to properly treat them as well as to guide both the physical therapist and their patient with EDS through the Muldowney exercise protocol. This book will cover such topics as: how joints sublux in this population, how to find the right physical therapist, how to exercise without injury and what physical therapy techniques works best. By the end of this protocol people with EDS should be better informed about what is going on with their body and how to make it better. Please contact us if you would like to borrow a copy or are interested in other resources that may help treat a person with HSD/EDS.
The NZ Ehlers-Danlos Clinical Pathway. After much hard work by many clinicians in the field, we are lucky enough to have this Ehlers-Danlos Clinical Pathway. This document is made for all clinicians in New Zealand who may need some guidance with treatment and diagnoses. Please find the link here to this document. Please feel free to share this document with any clinicians you feel may benefit from reading these guidelines.
For the latest medical and science news and information on HSD/EDS please click here.
Diagnosis and management of vascular Ehlers-Danlos syndrome: Experience of the UK national diagnostic service, Sheffield
The Ehlers-Danlos Syndrome National Diagnostic Service in Sheffield, UK, has published a new paper on vascular Ehlers-Danlos syndrome (vEDS) diagnosis and management, in the European Journal of Human Genetics:
Diagnosis and management of vascular Ehlers-Danlos syndrome: Experience of the UK national diagnostic service, Sheffield.
Authors: Jessica M. Bowen, Monica Hernandez, Diana S. Johnson, Claire Green, Tammy Kammin, Duncan Baker, Sylvia Keigwin, Seiko Makino, Naomi Taylor, Oliver Watson, Nigel M. Wheeldon, and Glenda J. Sobey.
Pediatric joint hypermobility: a diagnostic framework and narrative review
Pediatric joint hypermobility: a diagnostic framework and narrative review
Orphanet Journal of Rare Diseases volume 18, Article number: 104 (2023)
Tofts, L.J., Simmonds, J., Schwartz, S.B. et al. Pediatric joint hypermobility: a diagnostic framework and narrative review. Orphanet J Rare Dis 18, 104 (2023). https://doi.org/10.1186/s13023-023-02717-2
Rare Disorders NZ White Pages 2024
On the eve of Rare Disease Day, a wide range of rare disorders stakeholders gathered together for the launch of the latest Impact of Living with a Rare Disorder in Aotearoa New Zealand and Impact for Whānau Māori of Living with a Rare Disorder white papers at parliament. These papers were based on Rare Disorders NZ’s 2023 Voice of Rare Disorders Survey – the largest-ever survey of consumer-reported outcomes for rare disorders in this country. For a write-up on the launch of the White Papers at Parliament on the 28th of February 2024, please see Rare Disorders NZ’s write-up.