PIP-UK had membership to Rare Disease UK confirmed today! We are genuinely excited about this new partnership. We have been exploring their site and now we’re buzzing with all sorts of ideas … watch this space!
Tumblr blogger with Poland Syndrome reaching out to the community … take a look
We found a photographer exploring poland syndrome forensically as he puts it. It’s really fascinating to read and a great way to explore a persons relationship with their own physical features.
Sharing experiences about Poland Syndrome helps us all to understand what might be coming for a younger generation and also what we can do to support our friends and family. We featured a new blog we found a few weeks ago about one persons account of living with Poland Syndrome. Thanks to our readers she has posted again….
At PIP-UK we want to spread the word about Poland Syndrome. Today we introduce you to a new blog and ask that you take 5 minutes out of your day to read about the experiences of the author. The blog is about “A woman’s story of growing up with Poland Syndrome in a world obsessed with perfection”. Some readers may find the content a little hard on the heart but we urge you to stick with it. Sharing experiences is important for us all to learn.