Jenny - Life’s a Polyp

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.

Life’s a Polyp

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

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Donate to NORD FAP Research Fund

National Organization for Rare Disorders Familial Adenomatous Polyposis Research Fund

Life’s a Polyp Shop

All profits donated to NORD FAP Research Fund

Life’s a Polyp with Zeke and Katie

Jenny’s Children’s Book about Familial Adenomatous Polyposis

Kaleidoscope Rare Disease Stories Book

Jenny’s rare disease story and those of 47 other writers

Chronically Empowered Book

Jenny’s medical story & those of 64 others with chronic illness

Jenny’s Dear Cancer Article in Elephants and Tea Magazine

Jenny’s Guest Articles and Podcasts Interviews

YouTube

Podcast

Rare Patient Voice

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One Cancer Place

One Cancer Place, the first patient-powered cancer learning community. Mission: To create a global, all-cancer patient-led learning community connected to innovative treatment offerings.

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At RareDisease.net we empower patients and caregivers to take control of rare diseases by providing a platform to learn, educate, and connect with peers and healthcare professionals. RareDisease.net is brought to you by Health Union, LLC.

Patients Rising

To provide education, resources, and advocacy for people living with chronic and life-threatening illnesses.

EOS Community

Home to a community that stands strong together during times of change Brought to you by The Intentional Living Collective