Topic: ASCO 2013 and the Cholangiocarcinoma Patient Advocates

The ASCO (American Society of Clinical Oncology) begins Friday, June 28th.

Percy, Barbara, Stella, Linda, Kim, and I will be attending. As mentioned previously, Linda has received the RAN Research Advocate Grant for patient advocacy training.

The below link will explain our purpose and presence at this conference. Please take a look at the ASCO-Sponsored Patient Advocacy Booth where  Barbara and Stella will be informing physicians and others about our cancer, handing out brochures and Cholangiocarcinoma Foundation information packages, present a slide show of our foundation and talk about our discussion board and the most incredible members that have joined.  Percy will be attending plenary sessions and look over the poster boards for information pertaining to our disease.  For me, I will be all over the place, attending special meetings and sessions, connect with other advocates, and meet up with those making special appointment for a private talk. 
ASCO-Sponsored Patient Advocacy Booth
http://www.cancer.net/advocacy-and-poli … al-meeting

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: ASCO 2013 and the Cholangiocarcinoma Patient Advocates

The Research Advocacy Network program has been wonderful.  We have had a series of webinars with excellent speakers and I have learned a lot.  At ASCO I will be attending a number of plenary, educational and poster board sessions and will receive additional coaching.  We have a very busy schedule but I will definitely find time to meet everyone from the Cholangiocarcinoma Foundation.  I hope to use the skills I obtain through the RAN program to benefit all of us - patients and caregivers - who are dealing with cholangiocarcinoma.

Re: ASCO 2013 and the Cholangiocarcinoma Patient Advocates

ASCO's Patient Advocate Programs Work to Educate Patient and Survivor Communities.

http://chicago2013.asco.org/ascos-patie … ommunities

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: ASCO 2013 and the Cholangiocarcinoma Patient Advocates

I have been wondering if there are any individual patient advocates that help patients one-on-one to navigate the system and parse through the clinical trials and scattered information specifically pertinent to the patient's medical needs.  I would love to find such a person right now as I am no therapy at all with active disease and find myself flailing about in the miasma of clinical trial bureaucracy, while losing precious time.

Please advise if I should post this elsewhere, as well,

Much thanks,
Regina

Re: ASCO 2013 and the Cholangiocarcinoma Patient Advocates

Regina....personally I am aware of this program offered by the American Cancer Society.  They may also connect you with a Patient Navigator. 


Patient Navigator Program (Personal cancer guide)

The American Cancer Society Patient Navigator Program connects you with a patient navigator at a cancer treatment center. You can talk one-on-one with a patient navigator about your situation. This person will listen in your time of need. Call us at 1-800-227-2345, and we can tell you more about this program.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER