Luxturna – we need your help

Illustration of a little girl looking up a microscope at the stars - the microscope is drawn to look like a telescope

In September 2020, the National Centre for Pharmacoeconomics (NCPE) recommended that the life-changing gene therapy Luxturna™ not be reimbursed “unless cost effectiveness can be improved relative to existing treatments”.

Inherited retinal diseases such as retinitis pigmentosa (RP) and Lebers congenital amaurosis (LCA) are rare, serious and life limiting. These conditions cause progressive visual impairment, eventually leading to total sight loss.

Luxturna is the first and only medicine to address the underlying cause and positively impact on disease progression. Early administration of this medicine leads to greater, life-enhancing benefits. It is already available in the UK and EU member states including Germany, France, Denmark and the Netherlands.

As such we, along with those living with degenerative retinal disease in Ireland, are deeply disappointed by this initial recommendation.

Luxturna™ is still ‘under consideration’ by the HSE Drugs Group and it is a critical stage in the decision-making process. During this period, we are seeking to mobilise all our efforts to ensure that we engage with local representatives.

We’re asking all our supporters to engage with your local representatives to apply political pressure in support of reimbursement. Our community has funded retinal genetics research for nearly four decades – now we need the support of the Irish Government.

Send a letter or email of support 

Here are three simple steps you can take to help:

  1. Download our Luxturna™ letter of support
  2. Find out the contact details for your local TD by visiting
  3. Print, sign and post our letter of support. If you prefer, you can download our email of support and email your TD. And if you like – you can do both!

These three simple steps will go a long way to helping the decision makers listen, understand and deliver the right decision in the interest of our community and the futures of the people we serve.

Share on social 

Help us spread the word and share our campaign on your social media channels:



Download our ‘Our research makes the impossible possible’ campaign material to use on social:

Tell your story 

Speaking to the media and raising national awareness will also be an important element of our campaigning. If you are the parent of a child living with retinitis pigmentosa or Leber congenital amaurosis and you’re willing to share your story – please do get in touch with us.

If you have any questions or would like to speak to us about sharing your story, please email