Re: Follow-Up: RSS and Germany (FYI!!)

February 24, 2005

-Hi ! THis is great..As some of you know, I'm building a list of

dsoctors and clinicians who understand RSS...I now can add your

suggestions to my " Germany " row!

And, in addition to going to the (;-))MAGIC Convention in the U.S. I

highly recommend the Child Growth Convention which is held in the

fall in London every year. Dr. Stanhope is very involved with this

organization. Not as big as MAGIC, but when I went 3 years ago,there

were 30 RSS families there!

Address: 2 Mayfield Avenue

Chiswick

London

W4 1PW

Tel: 020 8995 0257

Fax: 020 8995 9075

Katy

-- In RSS-Support , " emily_joyner " <emily_joyner@u...>

wrote:

>

> Well, I tracked down some names and email addresses in Germany and

> WOW! - you would not BELIEVE some of the help I received. Outside

of

> this group, I have NEVER gotten so much help for Alyssa's

syndrome.

> The doctors I found were:

> Dr. Wollmann (with Pfizer but still seeing RSS children at the

> Children's Hospital in Tubingen, just a few miles from Stuttgart

> where we'd be), Dr. Dufke who is also with the Children's Hospital

> there, Prof. Ranke at the University where the Children's Hospital

> is, Dr. Binder with the Hospital and University, Dr. Eggerman with

> the University and also Dr. Reiss who is the Head of Human Genetics

> at the University. All of them specialize in either the treatment

or

> the study of RSS.

>

> I just wanted to pass on the information for anyone else who might

> eventually need it. And thank you for everyone's help!

>

> ~

February 24, 2005

Hi ,

You're welcome.

Oh and just so you don't get the wrong idea, we are not trying to be

helpful, we are just trying to get rid of you ! -- Just kidding (big

time) of course.

Sounds like taking Alyssa to Germany might be the best thing for her.

I hope that's true.

Please keep us informed.

Ken M

>