Monday, December 28, 2015

RareConnect Community

One of our greatest finds since having this diagnosis is the RareConnect Community for LPLD:

There's a place to write your story, make 'friends' with other people in the community (whether it's others with LPLD or other parents of people with LPLD), and discuss whatever is on your mind, The platform isn't perfect, it's difficult to search for old topics especially.  But it's something I rely on for the latest news on LPLD, and we even have an email pen pal for Monica that is Monica's age!
Two of three have LPLD!

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