I think you probably know that Madrigal is likely to have the first drug approved to treat NAFLD/NASH by the FDA. This is very big deal for a disease with no treatments and we have been working closely with them to make sure they consider the patient perspective.
Madrigal has asked me to find a few patients who are willing to talk with them about what the journey is like in real life. What was the path to diagnosis like? Many of us have had difficulty getting properly diagnosed. They would like to know more about that from a patient perspective. They would like to talk with people about what it is like to live day to day with the various symptoms of the disease. How does it affect the quality of our lives. How do different medical specialists deal with liver patients. I know many of you have stories about being managed poorly. What is it like socially? What kinds of stigma have you experienced. How do we live between doctor visits.
They are also interested in finding a couple of patients who would consider being part of a panel discussion at the big liver conference in November. I'll be attending as a panel participant but they hope to find some new voices as they have heard my story too many times.
I know these people well and this is a sincere effort to help the community and it will help them decide what to spend money on in the future to support patients. I really hope to find a few patients in this group to join me in telling our stories. If you are interested you can direct message me your contact information and we can see where this goes.
Thanks
Wayne