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Family days are fantastic events that connect rare disease communities, helping to break down the isolation that often comes with a rare diagnosis. The Norrie Disease Foundation held their own family day last month and organised an awareness week around it. They have kindly written their experiences and top tips for other patient groups hoping to do the same in today’s blog – enjoy!


In September 2018, the Norrie Disease Foundation (NDF) trustees decided to hold its first funded Family Day in November. The aim of the Day was to be fun-packed for all members of the Norrie community to get together, enabling everyone to have fun in a safe environment, with activities specially designed for the visually impaired – a therapeutic animal experience and goal ball. We also had tactile games on offer, and a quiet space was available for anyone who needed it. We also invited our medical advisory board and they in turn invited colleagues who they thought would be interested in attending. We know from our charity launch that families really value being able to talk to a medical professionals in a non-clinical setting. We also had members from the local sensory team and QVTIs on hand to help with our activities to enable parents to be able to have a break and chat with each other.

The trustees thought an awareness week in the lead up to the Family Day would be a great way to raise awareness of the condition, celebrate achievements and share developments from the research world into the associated hearing loss.

We decided to have a theme for each day, and have social media posts around each specific theme: what is Norrie disease, and what was the rationale for the charity; what does living with Norrie disease mean in reality; a focus on the new Sight and Sound Centre at Great Ormond St Hospital; celebrating the achievements of members of the Norrie community; and finally exploring what the pioneering gene therapy hearing loss research could mean for the community.

We had lots of family stories already posted on the NDF website, so rather than ask for more stories to share, we took key quotes and posted the link to the full article. We tried to share interesting perspectives that would make people who don’t know about Norrie disease think about how they would feel if they, or a family member, had the condition.

We’ve had great feedback from our community – it was a really good way of showing everyone what NDF as a charity is doing on their behalf, and enable individuals to share easily with their own friends and family and feel that they were involved in something exciting.

It was really lovely to have the Family Day as the climax to the awareness week, where the whole community got together to celebrate our, and their, achievements, and build relationships with those who understand what living with Norrie disease is like. Families being able to share and support each other in person is invaluable.


Our top tips if you are planning an awareness day or week are:

  • Plan, plan and plan! We can’t stress how important this is!
  • Tag and Hashtag! Tag anyone and any organisation that is relevant to increase your reach. Come up with a hashtag to use in every post, as well as for the theme for the day.
  • Socialise! We contacted our stakeholders and charities that we work closely with asking them to retweet and share to their followers. We also checked in advance where they were being specifically tagged that they were happy with what we had planned to post – in most cases they asked for tweaks.
  • Coordinating. We had one trustee who put together the posts and schedule, and asked the other trustees for feedback in advance of the awareness week. We found this a very efficient way to determine what to post and when.
  • Pre-schedule posts. We were able to schedule all of our posts in advance, meaning no one had to remember to log on and be responsible for posting the right post at the right time (planning!). You can also link up your social media accounts so you only have to post once (although this does cause issues with tagging organisations as they tend to have different handles for, e.g. twitter and facebook)
  • If you have a celebrity involved in your charity (e.g. ambassador, patron) use them to spread the word!

Huge thank you to the Norrie Disease Foundation for writing this blog for us! If you would like to find out more, Ethan, one of the boys attending the Family, has written a lovely blog about it. Kelly, the NDF’s Events Fundraiser and Awareness Officer, has also said that she’s more than happy for other patient groups to get in touch if they have any questions about putting on the day – contact [email protected] if you’d like to be put in touch.

The Norrie Disease Foundation’s first awareness week

by Libbie Read time to read: 4 min