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Often, people with rare inherited anaemias take many years to be given a diagnosis. Sometimes no exact diagnosis is ever made. This can be very stressful for patients and their families.
Because these conditions are very rare, patients can get seen by doctors who have never met anyone with this condition before. Frequently, patients have to travel very far to see a specialist. Because of this, not every patient across the country has equal access to the same care.
There are very few treatments available for rare inherited anaemias. In some cases there is no treatment at all. Sometimes all that is available is blood transfusions. Because these conditions are very rare, there is very little research being done about them.
This is your chance to help us identify what you and other patients feel are the most important questions that researchers should focus on for the diagnosis, treatment and management of rare inherited anaemias. We hope this helps focus the research that is going on in this area to something that will make a real difference to patients.
You can find out about our survey and contribute your questions by using the link below.
All the questions we receive will be grouped by topic and checked against published research to see if they have already been answered.
If we find pre-existing answers we will use this website to share that information.
New and unanswered questions will be ranked in order of importance by people with a rare inherited anaemia, carers, and health and social care professionals.
The end result will be a 'Top 10' list of research questions. These will be widely publicised. We will then work together with researchers and research funders and where appropriate, the pharmaceutical industry, to set up new research projects
The process is being facilitated by the James Lind Alliance (JLA) to ensure that it is done fairly and transparently.
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John Radcliffe Hospital
Nuffield Orthopaedic Centre
Horton General Hospital