progeria family circle

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5/26/10

progeria family circle

presentation EURORDIS - Rare Diseases Europe
Posted by Marjet Stamsnijder at 1:08 AM No comments:
Labels: Eurordis, progeria, progeria family circle
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Progeria Family Circle

Progeria Family Circle
The progeria Family Circle is a parents network that supports European Progeria children and their families.

our work

Since 1997 we have offered:

- support for individual families
- annual meetings
- up-to-date information
- raised awareness for public acceptance
- support for medical care and research

contact us at: info@progeria.nu

meet some children

  • Claudia
  • Hayley
  • Michiel and Amber
  • Bjorn (Dutch)
  • Harry
  • portraits

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      • progeria family circle

rare diseases in Europe

  • EURORDIS European alliance of patient organisations
  • ORPHANET portal for rare diseases
  • TASK FORCE rare diseases
  • HEALTH-EU health portal of the European Union

board

  • Joop van de Wiel -treasurer
  • Marjet Stamsnijder -secretariat
  • Prof. Dr. Raoul Hennekam -AMC
  • Dr. Peter de Boer -UMC St Radboud
  • Edith van Bodegraven
  • Lisbeth Brkic -Austria
  • Franky Palinckx - Belgium

supportgroup

  • Micael Correia -translator PT, FR, NL, EN, IT
  • Esma Pirlioglu-Özkan -translator DE, TK
  • Netteke Wielemans -web BE translator BE, FR, EN
  • Lucas Stalman NL
  • Celine van Dulken -translator
  • Benno Neeleman -photography
  • Ad van der Donk -web NL
  • Walter Bruienne & Carla Mendels FR
  • Bart Penning de Vries -translator EN, NL
  • Jülide Tuncer -translator NL, TK, EN
  • Piedad Cortés Vargas translator ES, EN

theatre group / dreamteam

  • Marianne de Pagter theatre
  • Peter Hildering technician
  • Janneke Stalman -childcare
  • Yuna Backx -childcare
  • Roos Neeleman -childcare
  • Micael Correia -childcare

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