Supporting organizations
There are many organisations and supports groups who help families face up to cancer. There are also many who devote funds and expertise to find better cures for the disease. Mentioned below are the 5 organisations who have either supported us or who are committed to finding better means of treatment for Ewing's Sarcoma.
Recently this organisation merged with Macmillan Cancer Support. This organisation provides a wealth of information on cancer both online and through printed factsheets and booklets. Supported with experienced and qualified medical profressionals available on the phone to help you make sense of everything. This has been an extremely valuable organisation to us as we did not know where to turn to for reliable information.
2. The Bone Cancer Research Trust
The Bone Cancer Research Trust was formed in 2005 as an alliance of a number of established local charities and groups of family and friends of Primary Bone Cancer patients throughout Britain and Ireland. They share a common goal – to promote research into the causes and treatment of Primary Bone Cancer, and in particular of Osteosarcoma and Ewing's Sarcoma.
The Trust has now widened its membership to include Bone Cancer Patients, Medical Practitioners and anyone interested in supporting research into these disabling and life-threatening diseases. The Trust is also looking to provide information, support and, in the longer term, counselling services for those suffering from Primary Bone Cancer, and their families.
We are a group of parents of children treated at the Yorkshire paediatric oncology and haematology Unit at St. James's Hospital in Leeds who are suffering from malignant diseases or severe blood diseases. Supported by relatives, friends, medical and nursing staff we are dedicated to combatting childhood cancer, leukaemia and serious blood disorders and to making the lives of the children and their families more bearable.
Every day 10 families are told their child has cancer. CLIC Sargent is the only charity that offers them all round care and support. That's because we're there... caring every step of the way:
- During treatment - specialist nurses, doctors, play specialists, Homes from Home
- In hospital & at home - specialist social care and family support
- In the community – specialist youth services, holidays, grants, helpline
- After treatment – helping survivors, supporting those bereaved, research
CLIC Sargent provides the widest range of services and the highest number of care professionals. Our services are tailored to family-needs, using feedback from our service-users. As advocates we give children, young people and their families a strong national voice, helping them to be heard and understood. Our clinical research looks at ways of improving treatment and managing side-effects, to help patients and to improve quality of life for survivors.
The Sick Children's Trust was founded in 1982 by two paediatric specialists Dr Jon Pritchard and Professor James Malpas. They believed that having parents on hand during hospital treatment benefited a child's recovery. Rainbow House, our first Home from Home, opened its doors to families with children undergoing treatment at Great Ormond Street Hospital in 1984.
Today we have seven Homes from Home at major hospitals around the country, each providing clean comfortable accommodation for families with seriously ill children.
There is a growing demand for our 'Homes from Home' as children must increasingly travel long distances to get the specialist treatment they need. To date we have helped more than 30,000 families.
To run our 'Homes from Home' we rely entirely on voluntary donations and we need to raise at least £800,000 every year to keep them open so please do get involved and help us make a real difference to the lives of the families we support.
6. ROHBTS - Royal Orthopaedic Bone Tumour Service
ROHBTS was formed in response to the needs of patients and families faced with the often unexpected and always unwelcome arrival of bone cancer in the family. The need to talk to those who know and who have been through the process of discovery and treatment is paramount at a time of uncertainty and fear for those involved. ROHBTS is run by those people who have been through the process, who know at first hand just how others are feeling and what they need to help them through.
Working with the dedicated staff of the Woodlands, ROHBTS provides support by:
- Counselling
- Advice
- A telephone support tree
- Point of admission packs
- Direct and personal Support visits
- A Holiday relief fund.
- Patients medical equipment
- ROHBTS was set up in 1989 as a self-help group for parents of children with bone cancer. They have now extended their support to all patients that are treated at Woodlands (ROH) as well as offering support for adults with sarcoma.