Should I go to a conference about my disease?

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Joyce speaks with two people who attended the VHL Conference in Houston in June 2011: Michelle from Texas and Sue from Tennessee. For Michelle, it was her first such meeting.

In addition to the expense and time commitment of going to a conference about your disease, there are always emotional barriers to cross — Will it be a downer? Will I be upset? Will the people I meet be so sick I will be terrified?

In retrospect, they found it very empowering to attend the meeting, meet others on the same journey, and learn strategies for managing their health.

In sum, both of them worthwhile to make the trip, meet other people dealing with your disease, and meet the physicians and researchers working to find a cure.

We also talk about the difference between a Patient Support Meeting (designed for patients) and a Medical Symposium (designed for physicians and researchers), and the role of a Patient Advocate in working with research.

We encourage people to go to a meeting about their disease, mix with physicians and researchers and other patients, and learn more about what it will take to achieve a cure, and learn too how you can help to make that happen.