We have an opportunity to make what RNIB publishes about aniridia as good as possible.

They want your valuable input on their online information. Read and critique it.

What is needed

RNIB maintains details on its website about various eye conditions. These resources are often the first point of contact for individuals, families and professionals seeking reliable information to answers queries. Every three years, these factsheets get a thorough medical review and update. This is where you come in.

We all want the factsheet to provide:

• Useful information that addresses your real-world questions and concerns
• Clear explanations that are easy to understand for people at all stages of their aniridia journey
• Concise content that covers essential points without overwhelming readers

How you can help

We’d love to hear from you, whether you:

• have aniridia yourself
• are a parent, partner, or family member of someone with aniridia
• are a professional with an interest in aniridia
• are new to the aniridia community or have decades of experience
• have used RNIB resources before or are unfamiliar with them

1. Review the draft factsheet
   If you have difficulty accessing it,we can send you the Word document version
2. Fill in this short questionnaire to give your feedback and ideas
   To do this directly and verbally we can put you in touch with the team at Eye Health Information Team at RNIB

We will pass on your responses to RNIB. We will also use it to influence our publications.

All perspectives are valuable. This is a wonderful chance to ensure that future generations of people affected by aniridia have access to the most helpful, accurate, and accessible information possible. Your lived experience and insights can help shape a resource that will benefit countless individuals and families.

RNIB is Patient Information Forum (PIF) accredited, which means they’re committed to the highest standards of health information. Part of this accreditation requires gathering feedback from real users – people like us who live with aniridia or support someone who does.

Get in touch

If you have any questions about this opportunity or want to know more contact us. We’re here to facilitate this important collaboration between the aniridia community and RNIB.