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Let's talk about the pros and cons of attending a patient conference. What are the benefits? or what kept you away? We would like to learn, so that we can serve you better.
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Your comments here will also be very helpful.
Best wishes,
Joyce
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I would LOVE to attend the VHL conferences every year, but it is too expensive to travel. With being in grad school, having two small children, and paying all our medical bills for three of us with VHL (you all know what I'm talking about with the medical bills here) we just can't afford to travel. Please bring a conference to Colorado!!!!
I ALSO CANNOT TRAVEL BECAUSE IT IS EXPENSIVE. VHL IS VERY COSTLY. PLEASE HAVE A CONFERENCE IN NORTHERN CALIFORNIA.
I, also, would love to attend. I read the articles when they finally come out. Come to Dalas:) , or broadcast it.
Cost of travel, hotel and meals is always an issue. Time off of work is also a consideration with limits on the amount of leave time you can take per year. I want to save leave time for vacation with my family. I would also like to attend conferences if the afore mentioned weren't an issue.
I loved the conference. I had the opportunity to take home some useful info. , do some networking and meet some very dedicated individuals working to find a cure for vhl. I just finished Patricia Foote's book "How Are You?" What a great resource! I would highly recommend this book to anyone who has vhl. I was also deeply moved by her personal story. I hope she's doing well.
Thanks for the input!
A few responses to the above. Patricia Foote is doing well. She has the ups and downs you are all familiar with, but in general she is having a very good life. She periodically does volunteer work for us, most recently as a consumer advocate reviewing the research proposals.
We have been trying to balance the cost and other issues. If we meet only once a year, the meeting cannot be near everyone. We move the meeting around the country, but even when we are 2-3 hours from someone we still hear that it ought to be closer. It's a big country! so 2-3 hours drive is in fact as close as it is likely to get.
So here's the current thinking:
1. We have made videos of the last three annual meetings, which are on the web at http://vhl.org/videos Whether you attended or not, the information is now available to you.
2. What this does not include, of course, is the human interaction -- the hugs. Local meetings are easier to create close to home, and if only a half-dozen people show up, that's fine. So we encourage EVERYONE to help create a meeting local to them. For a local meeting, perhaps with one speaker, Dallas and Washington state and northern California are all distinct possibilities. Jenny created a wonderful meeting in Washington state last year, and I know she and her co-chairs there will do so again.
3. National meetings are getting to be very expensive. Even though the doctors donate their time, and usually donate most if not all of their travel expenses, between the hotel food charges and hotel rooms, it's getting to be $8000 a year for this meeting. We have been debating whether to continue this pattern, or perhaps go to one national meeting every two years, opposite the medical symposium, so that we don't have two big meetings in the same year. Since we have recently been to three of the four corners of the U.S., we are thinking Kansas City or Pittsburgh or Ann Arbor for the next meeting (2010 or 2011).
4. Webinars, on the other hand, are much less expensive. For example, we have a webinar coming up at the end of July on the subject of the pros and cons of stereotactic radiosurgery for brain and spinal cord hemangioblastomas. Anyone can attend, anywhere. We will even pay for free phone access from any country. Even with the free-phone access, this is dimensions less expensive than holding a national meeting, we can get the top expert with little disruption in their own schedules, and the recording will be there for you after the meeting.
So we're trying! Please let me know what works best for you. See http://vhl.org/videos for the recorded sessions (conferences and webinars), and please let me know your reactions.
Thank you!
Joyce
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