Leicester Support Group Meeting

Over the years, we have established contact with other charities that are patient support groups. We share information about contacts and strategies and generally collaborate to establish best practice and the relationships soon become mutually beneficial. A new...

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The impact of Prescription Charges

Yesterday we attended our first meeting of the Prescription Charges Coalition at the headquarters of the Parkinson’s UK. The meeting was a real insight into how the charges for prescriptions in England is impacting on the lives of patients with Long Term Conditions....

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Second Meeting with the British National Formulary

Two years ago, we had a meeting with the head of the British National Formulary (BNF). The BNF is the booklet that is produced by the Royal Pharmaceutical Society and the Royal Society of Medicine and tells doctors how to treat particular diseases. At that meeting we...

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The Meeting with NICE

We recently let you know that we would be having a meeting with the Director of Guidelines at the National Institute of Health and Care Excellence. The meeting lasted 45 minutes and it was reassuring to know that the Institute in general, and the Director and his...

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Well Done Rhona!

Gold Member Rhona Bell has successfully completed the 96-mile West Highland Way walking route – and she raised £675 for the Pernicious Anaemia Society. Rhona says, “I love the outdoors and have wanted to walk the West Highland Way since I was a teenager. When, out of...

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Important Step Closer to New Guideline

After nearly four years of lobbying we have received an invitation to meet with Prof. Mark Baker, the Director of the Centre for Guidelines (CfG) at the National Institute for Health and Care Excellence (NICE). This invitation follows on from a request for NICE to...

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Report on the Conference in Denmark

The 11th International Conference on Homocysteine and One Carbon Metabolism that we were invited to speak at has now closed. See also the earlier news post about the conference here. The event, held over five days in Aarhus, Denmark, attracted over 200 delegates from...

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Treatment Is For Life – Leaflet

A new leaflet relating to the Treatment of Pernicious Anaemia is now available in the Library section of the website. It has been written for members to address two problems that we are dealing with on a daily basis. Firstly, it addresses the dangerous and all too...

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