Rare Disease Day - 28th February 2015

Support Events

2019 CMN Conference

We are very excited to invite all our members to the first ever Caring Matters Now Conference, taking place 5th-7th July 2019 at the Liddington PGL Conference Centre.

Our weekend conference is going to be cram-packed full of activities which will cater for everyone! We have planned specific activities for our adult members, teens, children and parents, including lots of fun outdoor pursuit activities; psycho-social presentations and workshops; CMN research presentations including Q&A session with the CMN research team – and much more!

Find Out More About The 2019 CMN Conference

Support Days

There will be no support days in 2019 as we are hosting the CMN Conference.
Take a look here for more details.

The CMN support group hold support days across the UK throughout the year. The aims of the support days are to:

  • Give one-to-one support to those affected by CMN and their families
  • Give medical advice to those affected by CMN and their families
  • Give an opportunity for CMN members to meet and develop friendships

The support days are very well attended and all who attend feel welcome and find the days very beneficial. The days are always informal and child friendly.
If anyone has any suggestions or ideas for our support days, maybe to help encourage more families to attend and to widen the attendance to teenagers and adults who suffer from CMN, we would love to hear from you. We feel that family days are a great opportunity to meet old and new friends and those that are now older are invited to come along to help support new families with your experiences of dealing with CMN.

Please email Lucy at lucyh@caringmattersnow.co.uk with your ideas and suggestions.

Regional Gatherings

** No attendance from Dr Kinsler at these events**

The CMN Regional Gatherings are similar to that of the CMN Support Days but without the attendance of Dr Kinsler.  Organised by the support contact and attended by some of the CMN trustees.

The aims of the Regional Gatherings are to:

  • Give one-to-one support to those affected by CMN and their families
  • Give an opportunity for CMN members to meet and develop friendships

These days are informal and child friendly.

View upcoming Regional Gatherings

CMN Activity Weekend

By attending an activity weekend like this it could potentially make a huge difference to a persons’ self-esteem and confidence in dealing with CMN.

The activities would allow children and parents to bond and enjoy quality time together and by attending the activity weekend we hope long term friendships will develop and flourish.

Being given the opportunity to talk to someone who may have or is encountering the same experiences, whether positive or negative of living life with CMN can benefit those affected immensely and would prevent the feeling of isolation.

Adults with CMN Gathering

We are continually developing and better establishing the support on offer to adults with CMN. We introduced the Adults with CMN Gathering in 2014 and since then have tried different venues and forms of hosting this event.

We are keen to increase our support for adults with CMN and the first step is by organising these small events whereby adults with CMN can all meet, in a relaxed and informal way, for what may be the first time. In time getting together like this can help us better establish what support is needed for adults with CMN and gain feedback to assist us in developing this area of support.

View upcoming Adults with CMN Gatherings

Teens Big Day Out

Following the success of the previous Teens Big Day Outs we have are now making this a regular annual event in our support calendar.

We feel this is a really important time to bring together those with CMN aged 11yrs to 17 yrs. Allow them an opportunity to get together with like minded teens with the same condition and build friendships in a relaxed, fun, social environment.

View upcoming Teens Big Day Out