Philippa Thomas Online

Life and leadership coaching


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Facebook empowering patients with rare diseases

Here’s another example of social media making a difference – well beyond the “feel good” boost of knowing you’re not alone out there. I helped fix up this piece for Nancy Shute of NPR on the way that patients with rare diseases are sharing information, advice and contacts online. Only last week, women with the rare lung disease LAM or lymphangioleiomyomatosis, came together via Facebook to help a very scared young woman with little English and a new, terrifying diagnosis. If you listen to her story and want to know more, do visit the LAM Foundation. I’m biased. I have LAM, and I want a lot more people to have heard of it, so more women are diagnosed early, and get to live.

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I feel like I’m five again

I’m sitting in class at the Nieman Foundation learning from Josh Benton of the Nieman Journalism Lab how to write in HTML, the basics of websites, blogging and so on. I’ve been blogging for family and friends for years but how have I managed so long as a journalist in such ignorance?! I think I’ve always assumed there’s a separate tribe which “knows” about these things, and I am too old/witless to be part of it. Time to change huh?