Jenny is a Rare Disease Advocate for Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). Through LAP she focuses on raising awareness about FAP and SBS and patient empowerment. Jenny started the NORD FAP Research Fund in 2015 and donates profits to the fund from LAP Shop and her FAP Children's Book.
Donate to Jenny’s Chapter in the Positively Rare Book
My chapter focuses on my rare diseases of FAP & SBS. The book will have stories told by 20 – 25 people with rare diseases & won’t shy away from sharing the hardships we have been through, but it will also show the good things that have come from it, the lessons we have learned, and the ways we find joy. More importantly though this book, it will raise awareness and it will provide hope
Donate to NORD FAP Research Fund
National Organization for Rare Disorders Familial Adenomatous Polyposis Research Fund
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