Cystinosis Recent Activity

• 

  Cystinosis poster
  topic, published about 1 month ago

  show transcript

  A poster entitled "The Role of a Research Nurse in a Cystinosis Study," recently won an award from the National Institutes of Health

  http://d2ifnik2o6ckzy.cloudfront.net/Cystinosis_poster.jpg

• 

  Marketing authorization for RP103
  topic, published about 1 month ago

  show transcript

  Raptor Pharma has successfully submitted an application for marketing authorization for RP103 to the European Medicines Agency based on the success of the stage 3 trial

  http://www.nasdaq.com/article/raptor-says-ema-determined-marketing-authorization-application-for-rp103-valid-20120326-00209

• 

  Concert de soutien à Lyon
  document, published 2 months ago

  show transcript

• 

  Concert
  topic, published 3 months ago

  show transcript

  Bonjour à vous,
  
  Samedi 31 mars 2012 à 20 h à la salle Molière, à Lyon, l'association cystinose france invite les artistes de l'association amethyste pour un concert de soutien en faveur de la recherche sur cette maladie. C'est un drame musical et poétique (chants, piano et textes)
  
  Nous vo...

• 

  Cysteamine therapy: a treatment for cystinosis, not a cure
  topic, published 4 months ago

  show transcript

  The Cure Cystinosis International Registry (CCIR) partnered with Stephanie Cherqui, PhD for this research.

  Link courtesy of the Cystinosis Research Foundation:
  http://natalieswish.org/files/CherquiKidneyIntern2012.pdf

  Follow them on Facebook here: https://www.facebook.com/CystinosisResear...

• 

  Forum use
  topic, published 6 months ago

  show transcript

  You're French, don't hesitate to post in French. If you want a message translated, ask for a translation. I'll be happy to help you in any way if I can.

  The French website will be updated. We will let you know when we put it online and wait for your criticisms. The forum will be used (linked fro...

• 

  Pharmacy students research eye drops
  topic, published 7 months ago

  show transcript

  Final year pharmacy students present their research on easier to use eye drops:
  http://bit.ly/ua1fGJ

• 

  Newsletter famille Cystinose Octobre 2011
  document, published 7 months ago

  show transcript

• 

  Delayed release (DR) cysteamine (RP103)...
  topic, published 7 months ago

  show transcript

  The results of the Phase III trial seem to be positive (http://bit.ly/ojOgaG), what does this mean to patients? When can patients realistically expect this new drug to be approved by the drug regulatory agencies?

• 

  Hello
  topic, published 8 months ago

  show transcript

  I am the mother of 4 children, of which, my daughter Emilie is 6 years old and is affected by cystinosis and Fanconi syndrome