Would like to meet people with BPES

[Guest guest]

Hi

I would very much like to meet people with BPES. I am travelling to

Amsterdam, Netherlands, 10th - 16th August. If there are any members

of the group who are interested in meeting up, please let me know.

Also, I will be in New Orleans for the last two weeks of November. A

few years ago 8 families met up for the day in St Louis. Two of the

families were represented by 3 generations. It was really nice to

meet so many people and share experiences. If people are interested

in arranging something later in the year, I would be happy to help

and co-ordinate.

Shireen

PS, by the way, if you click on here:

blepharophimosis/members

You can see a list of members. Some people have listed where they

live. It is easy to update. Makes it easier to find people who may

live nearby, or near a place you may be visiting.