Press Release - Cross-Border Healthcare Survey

Posted on Friday 2nd October, 2015


Press Release
For immediate release

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Survey launched to quantify the difficulty experienced by people with limb difference in accessing essential treatment using cross-border healthcare

Oct 20 2015 - EDRIC the international umbrella body for the limb difference community, in cooperation with the University of Leeds, has launched a survey to highlight the health inequalities encountered by people with extremely rare congenital limb conditions.  The launch took place during the Dysmelia Expert Forum Conference in Stockholm (Oct 9-11), during which Experts and those affected by limb difference came together on equal terms.  It will leave as its legacy a permanent expert network for dysmelia which will encourage further research and field questions from people who are currently unable to access specialist treatment because their conditions are so rare.

The survey is aimed at gathering the evidence base for the health needs of people with limb difference, the structure of the expert network and how to assist all stakeholders with cross-border healthcare, which is the right of every EU citizen.

"Healthcare for patients with rare diseases, such as the 40 dysmelia syndromes, is characterised by health inequalities, even in developed countries," said EDRIC acting Chairwoman, Michaela Moik.  "These are caused by the lack of availability of highly specialised health-services, which result in health problems such as high infant mortality, declining health, loss of quality of life, premature ageing and even death."

In order to change this situation EDRIC is now building an expert network.  Health networks constitute a solution for the problem of health inequalities.  The network will connect patients and non-specialist health professionals with highly specialised experts across geographical borders.  It will organise properly specialised health services - using knowledge dissemination, second opinions, tele-medicine and cross-border healthcare.

In order to understand what the needs of both patients with dysmelia and the health professionals working with them are, EDRIC is conducting a research study.  The study asks about unmet needs and knowledge of cross-border healthcare.  Interested parties (those with limb difference, the parents of limb different children and experts in the field) can complete the survey which takes between 10-20 minutes by following this link:

This survey builds on a previous survey organised by the University of Leeds and EDRIC on the specific health needs of expectant parents of young children with limb difference.  "This first survey of over 400 parents found that people have a very poor experience when their baby is diagnosed with a limb difference" said Dr Judith Johnson, Lecturer at the University of Leeds.  "Most were not told about support and services that was available to them, and we need to understand how we can improve this."

EDRIC's research showed that these parents were desperately seeking answers and not finding the right information.  Consequently the 'What If? Your Baby Has a Limb Difference' portal was created in an attempt to fill that gap.

EDRIC acting Chairwoman Michaela Moik said:

"Our last survey pointed to the unmet need of an information portal addressing the needs of young parents.  The data gathered from this survey will now allow us to build an expert network and get on top of cross-border healthcare.  We are very excited about this."


Notes for editors

  • For further information in French or English please contact EDRIC Communications Director, Geoff Adams-Spink by email to geoff.adams-spink@edric.eu or call +44 7711 898787
  • For further information in German please contact EDRIC's Chief Operating Officer, Tobias Arndt by email to tobias.arndt@edric.eu or call +32 483 73 65 19
  • For further information in Italian please contact EDRIC's Treasurer, Salvatore Giambruno on sal.giambruno@edric.eu or call +39 348 8749160
  • The Dysmelia Experts' Forum Conference - was held from October 9-11 - was hosted by EDRIC (European Dysmelia Reference Information Centre), the EX-Center - the world's only centre of expertise for multiple limb disorders - Bräcke diakoni which is one of Sweden's leading non-profit organisations and FfdN (Föreningen för de Neurosedynskadade), the organisation representing thalidomide survivors in Sweden.  The event has been made possible thanks to a generous grant of 600 000 SEK (€65 000) from the Swedish Government. 
  • Dr.  Judith Johnson leads the survey team from the University of Leeds Department of Psychology.  She can be contacted by email: J.Johnson@leeds.ac.uk.
  • The European Dysmelia Reference Information Centre is a non-profit NGO registered in Sweden (no.  802444-3015)
  • EDRIC has 32 member organisations in 20 countries - the majority of them EU member states, but some as far afield as Chile and Australia - and represents more than 6,000 people living with limb difference
  • EDRIC runs an online Dysmelia Network (DysNet) including a frequently-updated, multi-lingual website, supported by social media activity on Facebook, Twitter and YouTube, and has an online multi-lingual forum, RareConnect, for information sharing and peer support
  • Dysmelia describes a number of extremely rare conditions - further details are available from DysNet

Tags: Press Release Limb Difference Dysmelia EDRIC DEF FfdN Bräcke Diakoni EX-Center Rare disease Press Release


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