Thanks for posting this Gavin.
A few comments:
I would like to address some of the key points:
Fundraising: we are witnessing increased activities in this area mainly due to the involvement of individuals focusing on this particular are.
Additionally, we see in increase of donations from private individuals. (Some as high as $20 thousand per year)
At a national level, patient advocates lobbying has yet to evolve with larger participation addressing our disease. Reason: We lack the necessary staffing.
I represent the patient community within the cooperative groups setting, i.e. NCI sponsored the North American Hepatobiliary Task for Clinical Trials Phase II/III. However; we are greatly understaffed in this particular area. We desperately need others to join in and advocate for our patients in various other clinical settings.
Research Advocacy Network Advocate Institute runs a class each year to train advocates in the basics of cancer research, provides the experience of attending the ASCO Annual Meeting, and helps advocates disseminate the research to the patient constituencies in their community.
Percy, Karen, Linda, and I have participated in their program. But, I am now looking for others to do the same.
I would love others to attend with us ASCO 2014, Chicago, May 30-June 3, and receive this excellent training that RAN offers to advocates. Please, contact me: firstname.lastname@example.org
And, not to forget: each member on this site is an advocate in his/her own right. Information shared, assimilated and provided to others encompasses the area of Patient Advocacy.
In a broader sense, the very rapidly changing role for advocacy groups such as the Cholangiocarcinoma Foundation is setting precedence for the changes to come within the near future.
Thanks and hugs to all,
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