Dr. Said Almamari from Oxford University in the UK is very interested in collaborating with the Cholangiocarcinoma Foundation. He is currently doing research on Primary Sclerosing Cholangitis (PSC) and Cholangiocarcinoma (CC). Upon the completion of his Study he will return to Yemen, where there are many cases being untreated.
Barbara DuPont, our very own Advocacy Volunteer represented The Cholangiocarcinoma Foundation at the American Association for the Study of Liver Diseases, AASLD – The Liver Meeting. The meeting was held in Boston, November 10 – 12. Saturday, Nov. 10th which was also the 5 year anniversary of the loss of Barbara’s love Jacques to Cholangicarcinoma – being at this convention was just where she needed to be on this day.
This was the first time that The Cholangiocarcinoma Foundation was present at the AASLD, American Association for the Study of Liver Diseases . Their were approximately 10,000 attendees. The Liver Meeting is the premier annual US conference on hepatology, covering all aspects of liver disease including viral hepatitis, fatty liver, hepatocellular carcinoma, and liver transplantation. Barbara was able to speak with physicians, surgeons, fellows, researchers, scientists etc. from all over the world AND handed out over 250 brochures and ran out of bracelets (180) on the last day.
The booth was located on Foundation Row, which was an excellent place to be. It was set up in a large hallway that led into the main exhibit hall, everyone had to pass by us to go to the exhibit hall. There were 11 other foundations , including several international foundations. We were the only Patient Advocacy Foundation in attendance.
Numerous attendees from Greece, Egypt, Costa Rica, United Kingdom, Thailand, Cairo, and Toronto were very interested in knowing about the foundation, as they are seeing a rise in incidence in their country. One physician from Costa Rica said that she alone has 6 cases this year. She was alarmed because her patients are young and they have a small population. She also knows of physicians in other towns in Costa Rica who are also seeing patients. Many had heard about The Cholangiocarcinoma Foundation and many had not. Barbara was able to show many attendees the site with the use of her iPad. Everyone was very impressed with the wealth of information it contained. Many people expressed their thanks for the immense efforts of the foundation in raising awareness. It is through this awareness that research, the ability to detect at an early stage, and the improvement of the treatment and care of people living with this cancer will receive, as well as the hope for a cure.
This was a successful venue for the Foundation. Plans to attend next year will be strongly considered. There was a true sense of increased attention and effort by the scientific and medical communty to further research and improve the options that are available to treat Cholangicarcinoma.
We have BIG news……we have representation on the FDA Advisory Committee.
Our Percy has qualified and has been accepted to function as Patient Representatives to the FDA Advisory Committees. Congratulations Percy and Congratulations Cholangiocarcinoma Foundation patients, families and friends.
The process of application and acceptance is lengthy, challenging and very time consuming. Our Percy weathered the storm (so to say) and is now officially representing our patient community and that of other diseases.
A quick overview of the position:
The Patient Representative is responsible for providing the Food and Drug Administration (FDA) and the advisory committee the unique perspective of patients and family members directly affected by a serious or life-threatening disease. The Patient Representative should have:
• Personal experience with and/or be knowledgeable about the specific illness or condition under discussion by the committee;
• The ability to articulate the perspective of patients;
• Experience as a patient advocate
• Formal affiliation with a patient advocacy organization;
• The ability to identify issues through communication with patient constituencies.
The Patient Representative’s role is to provide the advisory committee and FDA insight on issues, problems, and/or questions pertinent to the viewpoint of patients and family members living with a specific serious or life-threatening disease. S/he serves as either a voting or non-voting member of the advisory committee.
At the conclusion of each meeting, the Patient Representative will be encouraged to provide OSHI with a brief summary of his/her experience on the advisory committee and suggestions for enhancing patient representation, if any.
The Patient Representative must be well-informed about patient concerns and have the ability to understand and actively participate in advisory committee discussions. The Patient Representative serves on advisory committees when a product or therapy (drug, biologic or medical device) related to a serious or life-threatening disease is under reviewRead More