We Need Your Help

[AnthonyHeard]

THIS IS YOUR CHANCE TO HAVE YOUR SAY FOR RESEARCH

On the 24th April, in conjunction with The Haemophilia Society, the James Lind Alliance and a select group of health professionals, we are launching a national appeal for patients with bleeding disorders to participate in a web based survey. This will comprise the submission of subjects they, the patients, consider important for research and in relation to their specific condition.

The top ten questions will be submitted to the NIHR for their consideration for funding and subsequent research. Those not making the top ten, will then be considered for submission to pharmaceutical companies. Every submission is important.

This survey is open to all patients, carers, parents, clinicians and youngsters over the age of 8.

WATCH THIS SPACE FOR FURTHER INFORMATION.

[SoporRose]

What studies are being done about the relationship between stress and ITP?

What is being done to ameliorate the fatigue attendant on ITP and some of its medications, specifically Rituxan?

What research is being conducted to discover the causes of and cures for ITP?

What are we learning from the research being done in other countries and from the experiences reported by patients and their physicians?

[bubblesone in reply to SoporRose]

I agree with you, I think that that the amount of people that have fatigue, is to many, not to be said that, it is related to ITP. It is very hard to work at times and I fell its should be classed as a disability.

[AnthonyHeard Administrator ITP Support Association in reply to SoporRose]

Thank you SoporRose, these are all exactly the comments that the survey is interested in. When the survey is available we will issue a link to it here on this forum so please do complete it and include the points you have made. Many thanks for your contribution. Just as an aside, if you haven't already seen the latest information on ITP Research please do have a look at the following link...itpsupport.org.uk/index.php...