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

[Guest guest]

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!

~

[Guest guest]

- that is awesome news. I had no idea that Wollmann was still

seeing patients (although it seems a bit odd that a physician can

work fulltime for a pharmaceutical company and still see patients).

But what the heck -- he is probably the most experienced endo with

RSS, even above Harbison and Stanhope!

I am going to print and save your email, for any European families.

Guess you will be going to Germany after all, if it all works out!

>

> 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!

>

> ~

[Guest guest]

hey emily!!

that is so great!!!! who knew it would just fall into place!!!

good luck!! what a great opportunity you guys are getting!!!

jodie c

>

> 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!

>

> ~

[Guest guest]

wow is all i can say this could be a great move for you all hope it all works

out

cara mom to jacob

emily_joyner 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!

~