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Meet-ups and linking

Regional CHECT meet-ups

Retinoblastoma is a rare cancer with about 40-50 children diagnosed each year and as a result all the people affected are scattered throughout the UK.

The aim of the CHECT regional meet-ups is to bring together families and individuals who would like to meet others and share experiences and information in a relaxed and informal setting without involving long journeys.

Cambridge meet up

Health professionals from the Rb teams and prosthetists from the National Artificial Eye Service are often invited along to give support and information in this social setting.  The meetings may take place in church halls, sports centres or local tourist attractions for a fun day out or in the park/public space for a picnic.

With the help of CHECT volunteers, who take on the role of regional network co-ordinators, we are able to organise events and meetings in local areas.  Our support workers help these volunteers to find other CHECT members who would like to get involved with ideas, organisational skills and enthusiasm.

The meetings may bring together newly diagnosed families and older children, young adults and grandparents who feel that they have something to offer to others or just want to socialise.

Report back from our Eureka! meet-up

 

Beyond Rb

In 2009 a group was set up to provide social links for adults who had had retinoblastoma (Rb) as a child. The group decided to call themselves "Beyond Rb" and meet up in a variety of locations to encourage people from different areas to link in. The first meeting took place in a pub in Birmingham and other meet-ups have followed in Cambridge and Manchester.

For some people it may be that they would like to widen their social circle.  Others may want to meet someone who has had similar life experiences as a result of Rb.  For some they simply want to go out and have some fun.  The membership of the group determine their own programme of activities and events depending on what appeals to most people, so new ideas and members are always welcome.

Any adult who had Rb as a child is welcome to join this group either by email, telephone or Facebook link.

There is a Facebook group 'Beyond Retinoblastoma - for UK adults who had rb'. Click here to open this page.

Details of all events will be posted on this page and people can also chat to other members of the Facebook group. The Beyond Retinoblastoma group and social get-togethers are organised by volunteer Stephanie Argyrakis. People interested in coming to the events can e-mail Steph via This e-mail address is being protected from spambots. You need JavaScript enabled to view it. and they will be added to the e-mail group and will receive all information that is put on Facebook via e-mail.

If you don't have e-mail access then please contact us on 0207 377 5578 and any of the team will be able to pass your phone number onto Steph and she will get in touch.

Linking

For those CHECT members who would like to make direct contact with someone who has similar experiences, our support workers are able to help them link by email or phone with someone who feels the same way.

Often it may be that their child has never met another child with an artificial eye except at a medical appointment and feel that they are the only one with an artificial eye.

In other instances a parent may need some reassurance from another parent who has experienced chemotherapy with their child at the same local treatment centre.  Sometimes parents meet in the clinics but due to the stress of the day never catch up with one another.

In the teenage years some may need a link to another who has come through a difficult time at school or just wants to communicate with another person affected by Rb.  We also link young adults who want to share their experiences with another person who can appreciate the way they feel about retinoblastoma.

Our support workers are happy to introduce people who are of a like mind and give their permission to pass on contact details.

Other sections which may be of interest:

My story

Personal accounts from relatives and individuals who have been affected by retinoblastoma (Rb)

Starting a new nursery or school

Information to help your child settle into a new school during or post treatment for retinoblastoma (Rb)