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Advocacy Websites Undergoing Review and Updates
by Despina Dinca

Illustration for webpage 'under construction' This new edition of the NA Newsletter sums up some exciting updates and changes of the past few months. Latest progress in research, nomenclature changes, awards won, prize awarded – you name it, we covered it in NA News!


To keep up with this dynamic environment, we are undertaking a review of our current website at the same time with the USA website, and we will work together to update them in the next few months.


We aim to provide the same united voice to advocate for those affected by VPS13A and XK diseases while we will be better coordinated with each other in our endeavour to:

  • support the patients, their families and carers, 
  • reach wider communities, and
  • have a higher impact in raising awareness. 


We are very keen to understand better what you, our audience, would like to see from our online presence. What will be helpful to you? What’s missing? What do you want to read more about? What would you rather see less of?


Drop us a line (or two, or more!) with the answers to those questions. It’s your chance to shine and contribute as part of our lovely NA community. Any ideas and suggestions you have, Despina would love to hear them at

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