Rare Disease Day 2015 - Press Release EN

Posted on Saturday 28th February, 2015


International Limb Difference Organisation Announces New Patrons Line-up to Celebrate Rare Disease Day

EDRIC Patrons
Feb 28 2015: EDRIC (European Dysmelia Reference Information Centre), an international disability organisation that helps people affected by congenital limb difference (known as dysmelia), has appointed five new patrons to mark Rare Disease Day. 

The new patrons are:

  • British one-handed pianist, Nicholas McCarthy
  • Australian Paralympian and inspirational speaker, Elizabeth Wright
  • Australian-born artist and thalidomide survivor, Simone Mangos who is based in Berlin
  • Italian limb different dancer and artist, Simona Atzori
  • US-based motivational speaker, Steph Palermo, who has Poland syndrome

The five newly appointed patrons join Alison Lapper - limb different British artist whose pregnant form occupied Trafalgar Square's fourth plinth - and German-born thalidomide and stroke survivor, Sabine Becker who now lives in the USA. 

EDRIC chairman, Geoff Adams-Spink, said: "EDRIC now has seven patrons whose celebrity will help to amplify its message - that people living with rare conditions must come together in order that their voices are heard and their needs are met."

"This is the best way to mark Rare Disease Day - an event intended to draw attention to everyone living with a rare condition and who often need support."

The new appointments follow a successful crowdfunding campaign in the autumn of 2014 which raised almost €17,000 (£12,600) to create an information service for people who discover that they have or are about to have a baby with a limb difference. 

All five of the new patrons contributed to the 'What If? Your Baby Has a Limb Difference' campaign, either by making or allowing videos to be used or donating items to attract donors. 


Notes for editors

  • For more information or to arrange interviews in English or French, please contact Geoff Adams-Spink or call +44 7711898787
  • For more information or to arrange interviews in Italian, contact Salvatore Giambruno or call +39 348 8749160
  • For more information or to arrange interviews in German, contact Tobias Arndt or call +32 483 73 65 19
  • Rare Disease Day aims to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives - for more information visit the Rare Disease Day website
  • The EDRIC/DysNet website,Twitter and Facebook
  • Dysmelia is the medical term for congenital limb deficiency.  It covers a wide range of rare conditions
  • Nicholas McCarthy can be contacted via his website or via his agent, Simon J Robinson or on Twitter
  • Elizabeth Wright can be contacted via her website or on Twitter
  • Simone Mangos can be contacted via her website
  • Simona Atzori can be contacted via her website or on Twitter
  • Steph Palermo can be contacted via her agent, Lisa Marr, her website or on Twitter
  • EDRIC's patrons have a dedicated page on the organisation's DysNet website

Tags: Press Release EDRIC DysNet Limb Difference Rare Diseases Rare Disease Day Disability Press Release


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