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Liver Cancer | Last Active: Dec 23, 2023 | Replies (16)
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Replies to "Keiran, while we give a bit of time for @afrancesca to respond and share resources for..."
Kieran-- I am sorry to hear about your dad's dx. Thank you, Colleen, for posting the website for The Cholangiocarcinoma Foundation---you will find everything you need on that site. I have been volunteering with this organization for 5 years now---it is an amazing group of dedicated and extremely caring staff and volunteers. Many of the oncoloigists specializing in Cholangiocarcinoma at the Mayo Clinic are heavily involved in this organization. I will add the link to the information for this year's Cholangiocarcinoma Foundation's 3 day Conference since it is coming up (2/23-2/25). It will be hybrid so you could register (for free) to participate on line. Here's the link:
https://cholangiocarcinoma.org/2022-annual-conference/
The first day--Wednesday--is considered the "patient day" where you will hear patient's stories and hear about the latest research and treatments.
The Foundation also has a program (info on the site) called "cholangio connect" that will pair you with a patient and/or caregiver mentor to help give you ongoing one-on-one emotional support through your dad's dx and treatments as well as help point to to the resources you need.
If you have specific questions for me, my research advocate email is: andreafparrella@gmail.com.
You, your dad, and your family are not alone. The CCF community staff and volunteer community will walk with you through this difficult journey.
Andrea