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A very “Happy Easter” to you all!

30 March 2021

A very “Happy Easter” to you all!

I hope you are all sitting out in your gardens, in the sunshine with family and friends, keeping to the social distancing rules (we cannot say we don’t know the consequences if we don’t!!!) and not huddled together as the forecast for snow has actually turned out to be true!!! How cruel that would be for everyone!

As we are all now talking about the roadmap back to normality, whatever the future may hold, now is the time to act. Each and every one of us is capable of, and certainly can help, to structure the future. It is so important that we get our NF voice heard, now more than ever, when there are so many things being debated.

We host many surveys, giving you the opportunity for direct feedback, not just because we have been asked to. We carefully consider every request and take advice from our Medical Advisory Board. We host surveys, when we know that the findings will have a positive impact, and will help to steer decision makers, policy, future research and ultimately will benefit every person diagnosed with NF.

It is so important that you have your say, so please do participate. Even if you feel you cannot answer, or you feel uncomfortable about answering certain questions, there is always a chance to pass on those sections, so please do still take part, and submit your answers. You will be helping to make everyone’s daily life just that bit better, and in conjunction make the world a far better place!

We are now also in the process of planning for World NF Month in May. Given the further easing of restriction on the 17th itself, please do think about taking part in some of our challenges, or even setting up your own.  You may also take a look at any of our other initiatives and help to make sure that our NF voice is heard.

I look forward to hopefully seeing many of you in the coming months!


With my very best wishes,


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