A number of you have asked me for a copy of the report I mentioned in my blog yesterday about the average cost of an AKU patient. Here it is for download: AKU – Michael Craig Study – cost of patient – final.
I hope you enjoy reading it. If you’re a rare disease patient group, why not carry out a similar study? The more data we gather on the cost and impact of rare diseases, the better.
I’m going to be away until Monday. I’m taking the 7am flight from London Stansted tomorrow to attend the AGM of the European Organisation of Rare Diseases (EURORDIS) in Amsterdam. There will also be sessions on PlayDecide (a discussion game to talk in a simple yet effective way about rare diseases) and Online Communities, so it promises to be an excellent few days. See you next week!