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Hi

Have a look in the database, you will see his contact details.

Shireen

-----Original Message-----From: annaloretta17692 [mailto:annaloretta17692@...]Sent: 22 March 2004 16:18blepharophimosis Subject: blepharophimosis kent smallHello,I am wondering how many people in this support group have participated in the volunteer research with Kent Small?What is his current email address for contacting him? Please post it to me. Thank You son

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Kent W. Small, M.D.

Professor

University of California, Los Angeles

200 Stein Plaza

Los Angeles, CA 90095

310-206-8137 lab

office 310-206-7475

fax 310-794-2029

kentsmall@...

blepharophimosis kent small

Hello,

I am wondering how many people in this support group have

participated in the volunteer research with Kent Small?

What is his current email address for contacting him? Please post it

to me. Thank You

son

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Shireen Hi,

Already done that. The email I sent said invalid address.Have a good day!

Andy Bowles & Shireen Mohandes <andy.bowles@...> wrote:

Hi

Have a look in the database, you will see his contact details.

Shireen

-----Original Message-----From: annaloretta17692 [mailto:annaloretta17692@...]Sent: 22 March 2004 16:18blepharophimosis Subject: blepharophimosis kent smallHello,I am wondering how many people in this support group have participated in the volunteer research with Kent Small?What is his current email address for contacting him? Please post it to me. Thank You son

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From my understanding...and I could be wrong...Dr. Kent Small is doing this on a research basis only...translation...it means that you may not get results for years...however..there is a lab in Belgium...that should send results in a few months...it costs money...but you will get answers quicker. If anyone is interested..I will find the info.

mathias <mathias@...> wrote:

Kent W. Small, M.D.ProfessorUniversity of California, Los Angeles200 Stein PlazaLos Angeles, CA 90095310-206-8137 laboffice 310-206-7475fax 310-794-2029kentsmall@...-----Original Message-----From: annaloretta17692 [mailto:annaloretta17692@...] Sent: Monday, March 22, 2004 10:18 AMblepharophimosis Subject: blepharophimosis kent smallHello,I am wondering how many people in this support group have participated in the volunteer research with Kent Small?What is his current email address for contacting him? Please post it to me. Thank You son

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Hi Debbie.

Yes, I would be interested in the info for the Belgium lab and probably many of us would. Could you post the address and contact

person and anything else you think we should know? Do you know the cost for the research

for a family? Thank you so

much! Sheila

blepharophimosis kent small

Hello,

I am wondering how many people in this support

group have

participated in the volunteer research with Kent

Small?

What is his current email address for contacting

him? Please post it

to me. Thank You

son

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Hi Sheila...

Here is the Belgium lab info:

Elfride De Baere, MD, PhD

Dept of Medical Genetics

Ghent University Hospital 0K5

De Pintelaan 185

B-9000 Ghent

Belgium

phone: 32-9-240-2478

fax: 32-9-240-4970

My understanding is that the cost is about 400 euros for the family. The geneticist we went to see in Atlanta (Dr. Francis Kendall) was the one who arranged all the paperwork that needs to be sent with the blood samples. If you do not have a referring geneticist...maybe caontacting the lab on what to do in that case would be the next best thing. Good luck and let us know what happens...as will I when we hear something.

Maybe..if it is all possible to have a place on the family site where we can post these names and possibly other doctors/surgeon etc...that we have had experience with...what they do...I guess some central place we can access or refer to...

Shireen...if you are reading this...what do you think? Is it possible legally and space wise? I know for me personally, it would be great to have access to that kind of data base.

Thanks, Debbiemathias <mathias@...> wrote:

Hi Debbie. Yes, I would be interested in the info for the Belgium lab and probably many of us would. Could you post the address and contact person and anything else you think we should know? Do you know the cost for the research for a family? Thank you so much! Sheila

-----Original Message-----From: Debbie Weston From [mailto:debweston@...] Sent: Tuesday, March 23, 2004 4:49 PMblepharophimosis Subject: RE: blepharophimosis kent small

From my understanding...and I could be wrong...Dr. Kent Small is doing this on a research basis only...translation...it means that you may not get results for years...however..there is a lab in Belgium...that should send results in a few months...it costs money...but you will get answers quicker. If anyone is interested..I will find the info.

mathias <mathias@...> wrote:

Kent W. Small, M.D.ProfessorUniversity of California, Los Angeles200 Stein PlazaLos Angeles, CA 90095310-206-8137 laboffice 310-206-7475fax 310-794-2029kentsmall@...-----Original Message-----From: annaloretta17692 [mailto:annaloretta17692@...]

Sent: Monday, March 22, 2004 10:18 AMblepharophimosis Subject: blepharophimosis kent smallHello,I am wondering how many people in this support group have participated in the volunteer research with Kent Small?What is his current email address for contacting him? Please post it to me. Thank You son

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