Rare Disease Day 28/02/2014

[BillCrum]

Perhaps not a reason for celebration as such, but important if it makes people realise that there are a lot of rare diseases out there that together affect a large number of people.

This will hopefully encourage the search for common factors across similar conditions and in time lead to progress on a broad front. That said, currently the emphasis in "rare diseases" is on genetic conditions and there is no evidence that I know of to suggest CLIPPERS falls under that banner.

Anyway, hopefully the doctors will edge towards a greater understanding of CLIPPERS in 2014.

[kim olsen]

My husband, diagnosed with Clippers May 2013, has recently been asked to participate in a five year Study through the Mayo Clinic under the direction Dr.Sean Pittock, who wrote the first paper on Clippers.

[BillCrum]

I recently spoke with one of the Mayo doctors and hope to be able to say some more about their research efforts in a few weeks.