The 2016 Annual Conference in Review
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Please use the below link for easier review of conference:
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MarionAs indicated by Marion, it was not easy to comprehend everything that was covered at the conference. However, what was quite evident was the number of Doctors, Nurses & Researchers who are working on CCA.
This is quite an uplift from the message I received when initially diagnosed: “This is a rare cancer. There is no cure. Nobody is working on a cure.”
Thank goodness for the professionals who see a challenge and decide to take it on.Patients and caregivers, many of whom you know either personally or by means of social media (including this board) participated in this unprecedented and extremely successful conference.
Listen to questions posed to physicians. You may find your answer here.Video overview of conference: https://www.youtube.com/watch?v=fe-kD2VQ2Ac&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx
Followed by a breakdown of sessions of all three days.
WELCOME TO THE CONFERENCE
https://www.youtube.com/watch?v=ETt3p6g4e7o&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=2PATIENT PERSPECTIVE: and MELINDA’S STORY OF HOPE
https://www.youtube.com/watch?v=HBT9AxehUJk&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=3MOBILE APP – BOSTON SCIENTIFIC – MOBILE APP FOR PATIENTS WITH STENT
https://www.youtube.com/watch?v=3t1eaNgJwR4&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=4WHAT IS A BILE DUCT? Dr. RENUKA IYER, PATIENTS AND SPECIALISTS
https://www.youtube.com/watch?v=2jygol1_UXM&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=5INTERNATIONAL CC PATIENT REGISTRY – WHY IT IS IMPORTANT TO PARTIPATE
https://www.youtube.com/watch?v=RBYkQzqWsxo&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=6GENOME WIDE ASSOCIATION STUDY (GWAS) RESULT TO HELP RESEARCHERS DEVELOP BETTER STRATEGIES FOR PREVENTION, SCREEING, AND DIAGNOSES OF TREATMENT.
https://www.youtube.com/watch?v=fHrLsynWW7E&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=7CHOLANGIOCARCINOMA RESEARCH – Dr. Juan Valle WHERE ARE WE WHAT ARE THE NEXT STEPS?
https://www.youtube.com/watch?v=X0_uDyi0TUI&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=8CLINICAL TRIALS – Dr. Mody – PROCESS OF CLINICAL TRIALS, REVIEW OF RESEARCH PROCESS, CURRENTLY AVAILABLE CLINICAL RESEARCH STUDIES
https://www.youtube.com/watch?v=Xakzh76zMYA&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=9WELCOME DAY 2 – Dr. Kim – UNIVERSITY OF UTAH, HUNTSMAN INSTITUTE, INTRODUCTION BASIC AND SCIENTIFIC ADVISORY BOARD MEMBERS,
https://www.youtube.com/watch?v=Mmk1JgyiwvE&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=10MOBILE APT FOR CLINICIANS:
https://www.youtube.com/watch?v=WcYOu2fGW6I&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=11MOLECULAR PROFILING
https://www.youtube.com/watch?v=VAT6Dnkzipk&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=12GLOBAL CONFERENCE
https://www.youtube.com/watch?v=VGcgzGsSxn8&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=13ADJUVANT THERPAY
https://www.youtube.com/watch?v=rG7nuWv7nAY&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=14RESECTION VS. TRANSPLANT DEBATE – DEBATE – DR. CHAPMAN -YES, DR. CHOTE – RESECTION – YES
https://www.youtube.com/watch?v=qk4qOUAcvug&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=15SYSTEMIC THERAPY DEBATE – ARE ALL PATIENTS TO RECEIVE SYSTEMIC THERAPY? SHOULD BIOMARKERS TAKE ON A GREATER ROLE? DEBATE: DR. JUAN VALLE VS. DR. KATIE KELLEY
https://www.youtube.com/watch?v=3gSFF17Bt5c&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=16WORKSHOP
https://www.youtube.com/watch?v=dDvcKNA_Pec&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=17ADVOCACY UPDATE – THIS IS ME, MARION, SPEAKING ON BEHALF OF ALL PATIENTS
https://www.youtube.com/watch?v=nssMNLx5TxI&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=18PATIENT PRESENTATION
https://www.youtube.com/watch?v=m7O0ZiEwQ-4&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=19PATIENT PRESENTATION
https://www.youtube.com/watch?v=5PoRnDFn8Bo&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=20GENETICS
https://www.youtube.com/watch?v=x3GmXDZdtNU&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=21INTERNATIONAL CHOLANGIOCARCINOMA RESEARCH NETWORK UPDATE
https://www.youtube.com/watch?v=mW4optruPSw&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=22CHOLANGIOCARCINOMA IN THE YOUNG (CITY)
https://www.youtube.com/watch?v=f6_tOx7WUl4&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=23THE CELLULAR ORIGINS OF CHOLANGIOCARCINOMA
https://www.youtube.com/watch?v=w8qIOFFrnKA&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=24NURSING GUIDELINES FOR CCA PATIENTS
https://www.youtube.com/watch?v=10ZExVwLmP0&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=25PATIENT PRESENTATION
https://www.youtube.com/watch?v=1MGoJPPnM-8&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=26ANIMAL MODELS
https://www.youtube.com/watch?v=TmzOl9dZ3PU&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=27WORLD CHOLANGIOCARCINOMA DAY
https://www.youtube.com/watch?v=22wqGedcjjE&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=28CONFERENCE CLOSING
https://www.youtube.com/watch?v=ACqqTLJNnew&list=PLY1d94IOkEa_W7A4fB8vjAiWiO88PxDmx&index=29So far I’ve only watched the patients’ stories and was SO impressed. Things they all shared in common was the need to get second opinions, be a strong advocate for yourself, and make sure you are at a major cancer center which has experience with CC. I often pass along this advice, but it was evident in the 4 presentations that the presenters were all alive because they took control and pushed for options. I was also very impressed to hear that there were 120 online listening in addition to 90 patients in audience. What a great turn out!!!!!
Thank you,
CatherineThanks for that Marion. Will try and get through them all as soon as I can. I would imagine that next years meeting will have to go a long way to beat this years!!
Hugs,
Gavin
The very much focused Cholangiocarcinoma Foundation Annual Meeting fostered collaboration, forged relationships, invigorated patients, scientist, and providers to work together on the common goal of making progress against a challenging and difficult cancer.
Don’t expect to comprehend the entirety of presentations; much of basic and science is way over our heads.
Enjoy.
Hugs
Marion
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