healthcare support

This page develops as I learn.

What I’m interested in, and why.


Up to date medical information, and family support, from Contact a Family


rare neurological conditions

PSP Association

PSP infographic


MSA Trust

MND Association

Huntington’s Disease Youth Organisation

Wilson’s Disease Association

Syringomyelia Arnold Chiari Association

Public Health Agency awareness raising


rare disease information & lobbying

Orphanet– the portal for rare diseases and orphan drugs

Northern Ireland Rare Disease Partnership (full disclosure: I am a Director of this charity)

NIRDP & torch relay

Rare Disease UK

Genetic and Rare Disoders Organisation

EURODIS: rare diseases Europe


Myalgic Encephalomyelitis


Action for ME

ME Association

but you don’t look sick- the spoon theory. The best thing you will ever read about chronic illness.



bone china

Blurt it out

Depression Alliance

Marian’s books Saved by Cake and The Mystery of Mercy Close

3 thoughts on “healthcare support

  1. Hi Speccy – I was having trouble finding where to comment on your recent posts – but did find a space here under the healthcare menu. I wanted to ask if you have come across these blogs and also
    Maybe I first met them through you but I thought it is good to hear that some doctors out there are really trying hard to be patient friendly, and also giving help to others how to do it. What do you think? And – hope all the stuff on this healthcare support thread is OK for you just now ME Depression Tiredness … if is isn’t – still you xxx E

    1. Elspeth, I have no idea what the problem with commenting was. We could blame me, or we could blame WordPress. What do you think? 😉
      I do know those blogs-n they are great sources of inspiration and validation. I’m chuffed you thought of me when you found them, thank you.

      I have great plans for this section, but never quite get round to doing with it what I’d like. My mental energy goes on other things, but I will get to it eventually.

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