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Red Robin Trust

Charity description

Red Robin Trust logo
Thank you for visiting our profile page on MyDonate.The Red Robin Trust was launched in 2014 after parents of children diagnosed with Maffucci Syndrome and/or Ollier's Disease, came together and realised there was a need for a trust to support these conditions.Ollier's Disease (also known as Enchondromatosis) & Maffucci Syndrome are extremely rare diseases. Ollier's occurs in one in every 100,000 people and Maffucci Syndrome even rarer.Thank you for taking your time to support the Red Robin Trust.

Ollier's Disease and Maffucci Syndrome are characterised by multiple Enchondromas affecting any bone in the body. Enchondromas are a type of benign bone tumour that originates from cartilage, as we grow the cartilage from birth should turn to bone, with these conditions this does not happen. This can cause bones to look bent, tumours become large, causing weakness of affected bone which can lead to a fracture or slow the growth. With Maffucci Syndrome multiple enchondromas associated with soft tissue haemangiomas (benign tumours made up of blood vessels) can also be found. Living with the conditions can vary for each individual, regular monitoring/examinations, surgery, therapy, ongoing pain and a chance of malignancy being just some of the issues. With no cures, limited funding for research, very little information, knowledge and support available and no clear medical protocol in place these conditions can feel like there are no answers to many questions.

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