Four amazing days have come to an end. Attending The International PBC Foundation Summit was nothing short of amazing ! Patients, patient advocates, nurses, and clinicians all together to make our lives better while educating others about our rare disease. There were several topics of "what if " that we collectively came up with action plans to achieve. All of these subjects are doable to achieve. Each group is committed to make their 'what if' happen.
1. A common website for patients to obtain information on PBC, global support groups/agencies, and links to research being done.
2. More diverse groups of people having easier access to participate in clinical trials. The use of placebos in trials will be eliminated.
3. Action plan to make sure 90% of all PBC patients receive accurate and comprehensive care.
I will also share information from several pharma companies.
I arrive home late Saturday night. Over the next week or so, I will relate information I took away from The Summit.
Thank you all for all your well wishes in this journey.