![]() Just as the UN’s Sustainable Development Goals have been a touchstone for our Vision 2020 group-operation sustainability audits, so they continue to guide and underpin our ambitiously scaled Vision 2030 goals. If you don’t have email access, please contact us on 020 7377 5578 and we will be happy to put you in touch with the Beyond Rb organisers.Leaving our world a better place for years Discover the impact legacy that your travel with &BEYOND is driving. You can also contact to be added to the email group and you’ll receive all information that is put on Facebook via email. Any adult who had Rb as a child is welcome to join the Beyond Rb Facebook group. 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. For some they simply want to go out and have some fun. Others may want to meet someone who has had similar life experiences as a result of retinoblastoma. The first meeting took place in a pub in Birmingham and other events have followed since then.įor some people it may be that they would like to widen their social circle. The group meet up in a variety of locations to encourage people from different areas to get involved. In 2009, a group called Beyond Rb was set up to provide social links for adults who had Rb as children. You can also find information for adults on our resources page. If you’d like to talk to us, please email or call 020 7377 5578. We offer support to our members throughout their lives and we can help with any Rb-related concerns you may have. Please note that CHECT support workers are not Rb medical professionals and do not give advice regarding the treatment or management of retinoblastoma.įor some people, retinoblastoma can have a lifelong impact. You can also find Lena at the Royal London Hospital and Sarah on the Rb ward at Birmingham Women’s and Children’s Hospital. Our Head of Support is Craig Blackwood and our support workers are Sarah Turley and Lena Copley. They also provide support for other members of the family, for example grandparents, aunts and uncles, brothers and sisters who have all been affected by the diagnosis in different ways. They can offer guidance through school years, during transition to adulthood and beyond, answering questions about other issues later in life, like managing artificial eyes, schooling or how to access genetic counselling. CHECT support staff are there for you so don’t be afraid to ask them to help. CHECT support workers can also help find the right person to solve practical problems or find out the answer to questions you may have, whether it is connected to retinoblastoma, financial assistance or the practicalities of coping with a child in treatment. People often find that talking things through helps to relieve fears and anxieties, so our support workers are non-medical staff who will listen to your concerns and assist you in finding the help and information you need. We offer lifelong support to anyone affected by retinoblastoma. Our support workers are there for families attending retinoblastoma clinics for treatment, screening and beyond. This is a difficult period in any family’s life, full of new information and mixed emotions, as well as practical matters to be dealt with. Concerns about the future, both short and long-term, can be overwhelming. ![]() When your child is first diagnosed with eye cancer, the shock can be numbing.
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