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Bardet Biedl Syndrome Family Association

Connecting families and sharing information on research, treatment, and therapies for Bardet Biedl Syndrome.

BBSFA Connect 2015: September 26, Marshfield Clinic

We had a terrific response to our survey on holding a conference in 2015 and many families responded that they were interested. There was a slight preference among those who would definitely or probably attend for September 26th. We know this won’t work for everyone but there are no perfect dates. Holding the conference in September gave us more time to make sure we can make everything run as smoothly as possible. And it made it possible to have more BBS Center of Excellence clinics slots around the conference.

There will Center of Excellence clinics the week before and after. Currently there are 4 open slots for September 22-25 and 7 open slots for September 28 to October 1. If you are interested in attending the clinic please contact Dr. Haws’ staff as soon as possible at this link. The slots will go quickly.

Why: Some may be wondering why we are moving to having a conference every year. There are several reasons.

First, the BBS community is growing. We hear from families who are newly diagnosed or have newly found us every month. Waiting for more than a year for the possibility of attending a conference is too long.

Second, for both new and old members, it is impossible to find a date and location that works for everyone who would like to attend a conference. For families who couldn’t make a conference when they were held every 2 years, it meant that 4 years would pass before they had a chance to reconnect with other BBS families and to hear about progress on BBS treatment and research directly from the experts.

Third, there are unique challenges to living with BBS. We wanted to create more opportunities for BBS families to meet each other, learn from each other, and support each other. While Facebook is a great resource for connecting with other people affected by BBS, it’s still not the same as sitting down face-to-face. We felt having more of those opportunities was important.

Our plan is that we will now have a conference every year. Conferences in odd numbered years will be focused on connection and living with BBS; conferences in even-numbered years will be focused on research. That doesn’t mean that there will be no opportunities to connect and share with other BBS families at our research conferences or that there will be not discussion of research at our connection conferences, just that the two conferences will be different. Knowing that travel to a conference is time-consuming and expensive for everyone, and not always possible, at the 2015 conference we’re going to test out some tools to let people who can’t make it to the conference in person participate in some of the sessions via the Internet with live audio and video. We can’t guarantee that what we try will work well, or even work at all at this point, but we’re going to try.

Stay tuned for details on cost, registration, agenda, and remote participation.