Walking the fine line of being heard versus ignored.

Many people affected by rare diseases rely on medical nutrition products such as low-protein modified foods or specialty formula as part of treatment for their condition.

We recently spoke with Patients Rising member Jenny Jones to better understand how patients view right to repair legislation when it comes to medical devices. As lawmakers across the country...

YouTube video by Life's a Polyp

YouTube video by The Chronic Truth Podcast

Individuals with rare diseases and chronic illnesses have significant rates of medical PTSD. Jenny Jones’ experience with FAP and SBS led her to develop medical PTSD. Now, as an advocate and …

Evolvv Health helps newly diagnosed cancer patients and caregivers navigate treatment decisions, access financial aid and practical resources, and find calm, compassionate coaching—so you feel support...

Proceeds from this merch benefit NORD Familial Adenomatous Polyposis Research Fund and Cure Alzheimer's Fund in honor of Jenny and Amy's mothers.Jenny and Amy share the life and chronic illness storie...

Jenny and Amy share their grief experiences over the last year after losing their mothers as well as the lessons they've gleamed from grief. Get your Fierce Mama shirt, hoodie, or tote before 10/18…

Jenny (Life’s a Polyp) and Amy share the life and cancer stories of their mothers as well as their own experiences, memories, and grief of losing their mothers less than a month apart. Jenny and Amy ...

Practical tips for developing self-advocacy skills

Proceeds from this merch benefit NORD Familial Adenomatous Polyposis Research Fund and Cure Alzheimer's Fund in honor of Jenny and Amy's mothers.Jenny and Amy share the life and chronic illness storie...

YouTube video by Tye Martin

Yay Yay DNA! Do You Wonder What Makes You You? With Mendel G. Cat. A story book about deoxyribonucleic acid for young readers. Art and words by Mark A. Hicks

This free, 3-part webinar series empowers parents and young adults with knowledge about inherited cancer risk, common genetic syndromes like Lynch Syndrome, Li Fraumeni Syndrome. CMMRD, and when to co...

Life's a Polyp explores life with two rare diseases - Familial Adenomatous Polyposis and Short Bowel Syndrome. It is also where A Daughter's Love Podcast is housed. In it, Jenny and Amy heal grief thr...

Jenny (Life’s a Polyp) and Amy share the life and cancer stories of their mothers as well as their own experiences, memories, and grief of losing their mothers less than a month apart. Jenny and Amy ...

Understanding CBT as a Tool in Chronic Pain Management

YouTube video by Life's a Polyp

Being a teen or young adult with a rare disease isn’t easy—especially when it comes to speaking up for yourself. But your voice is powerful, and this webinar is all about helping you use it with confi...

YouTube video by Under The Desk News

Reflections on My Caregiver Role for Mama

The Tye-Pod · Episode

Understanding CBT as a Tool in Chronic Pain Management

Part 1 of a Two-Part Series featuring Emily Rubin MPH, RD, LDN, Thomas Jefferson University HospitalWith over two decades of experience at the Thomas Jefferson University Hospital Division of Gastroen...

Part 1 of a Two-Part Series featuring Emily Rubin MPH, RD, LDN, Thomas Jefferson University HospitalWith over two decades of experience at the Thomas Jefferson University Hospital Division of Gastroen...

Summer 2025 Magazine

Beyond the Bag: A Discussion about Sexuality, Intimacy and Dating with an Ostomy WEBINAR DETAILS Date: July 23, 2025 Day: Wednesday Time: 8pm ET / 5pm PT Duration: 1 hour SECURE YOUR SPOT The Ostomy C...

Check here for collections of authoritative multi-media resources on a variety of topics that will help advance care of hereditary gastrointestinal cancer patients.

Michelle Springer, MS, CGC - CGA-IGC Communications CommitteeIf you didn’t have the chance to join us for our fourth webinar of the year (or are interested in viewing it again!), as a CGA-IGC member, ...