Developing a BHD Patient Voice

One of the more resounding messages that came out of the recent IKCC meeting (see last blog) was the power of proactive rare disease communities, and how patient advocacy groups can use this to inform new research. The benefits don’t stop there though.

We know that BHD Syndrome is rare, so very often a BHD patient may not know anyone outside of their own family who also has the syndrome. Who do you talk to about new symptoms, popular treatments, and more importantly effective treatments?

In cases like this, where individuals may be geographically isolated from each other, reaching out to another person is difficult, and there’s a distinction to be made. Sometimes you may not want to talk to your partner, or your medical doctor, but someone who is going through the same thing. In recent years the internet has made the world a much smaller space, and I’d like to use this blog to encourage people to reach out to each other. There are no stupid questions and every opinion counts.

Why not use our forum to either share your experiences or ask a question, maybe someone has the answer, maybe someone has wanted to ask the same question and is a bit reluctant to set foot onto the ‘information superhighway’!

Social metworking has really exploded recently, and we’ve developed a Facebook profile to keep up with the times! Click the link on the homepage to be ‘friends’ with us so that you can get timely updates about our activities. – the primary online resource for anyone interested in BHD Syndrome.

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