Who we are

 

The Yahoo Group “Blepharophimosis” is an international, non-profit, self-help group established to offer encouragement, understanding and information for individuals and families affected by this rare genetic condition.  The goal of the group is to provide a networking system for exchange of information, ideas and concerns with regard to experiences related to BPES.

 

For fourteen years now many families have been in touch with each other, in the early days this was achieved via the BPES Family Network, but now this is facilitated via the Yahoo Group which was created by The International Rare Disease Support Network.

 

This web site provides information about BPES and serves as a starting point for people wanting to obtain more information about BPES and considering getting in touch with other families around the world.

 

This is a volunteer organization and there are no membership dues or donations required.

 

We encourage you to share your experiences, suggestions or questions with regard to treatment options or information about BPES. This exchange is beneficial as part of our on-going education process and assessment of information about blepharophimosis.

 

But we discourage endorsing any particular treatment options. We feel that it is important to facilitate this exchange of information as support for one another, and to consult your medical specialists for their professional recommendations.

 

Would you like to talk to another family?

By joining the Yahoo group, you will be able to communicated with many families all over the world. Some of the members have indicated that they are keen to meet others in their area.

BPES Family Network: a personal account of why I am part of this group and what I have got out of meeting other people.

 

I was searching on the Internet and just simply came across the support group.  I got in touch  by email and since then I have met many people from all over the world.  I have learned a lot, and have been able to help other people by sharing experiences, information and photographs, and simply making friends.
     One of the things I like is that sometimes I am in touch with a member on a regular basis, and we exchange emails, meet up or call each other.  And then quite a few months pass by before either of us get in touch with each other, and that does not matter at all. 
    I have had the chance to meet families in person, and have corresponded with about 25 on an on-off basis over the past 13 years.  Sometimes it's just one or two emails.
    I like the Yahoo group very much. It is a very good source of information. Also, it supplies a very good chronicle.  It encourages people to see how others have posted, and have got replies. Don’t forget that some people reply privately if it is a sensitive matter.

S. M.

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BPES Family Support

Disclaimer:

 

The information here and other Internet information sources to which it refers, is intended to provide general information and should not be used to diagnose or treat a health problem or disease.

 

Do not use the information found here as a substitute for professional evaluation and treatment.

 

Any information you find here or on websites which we link to should be verified with your Professional Health Care Provider. Consult your Professional Health Care Provider with any specific medical questions or problems you may have.