----- Original Message -----
From: Eliane Gluckman
To: imracek@gentest.cz
Sent: Thursday, November 10, 2005 12:57 PM
Subject: patient FA

This is the answer of Dr Sledacek You should try to communicate with him
 Could you let me know what is your decision before I make any plan
Sincerely Eliane Gluckman


Dear Eliane, I will ask today our secretary to make xerox of any paper
concerning our search done for Ilja (including his HLA) as of course I
did the same already for Wolfram Ebel months ago. Please indicate to
which address I should send this and to which name and I will do it
right away. As to "official transfer" of donor search from us to your
center I spoke to our national registry and they have confirmed that it
is not necessary and there is no need, no official way exists, how to
transfer this. We have made the reservation of the donor : FR FNA 06832
but at this moment it is officially out as the reservation is time
limited and that time already passed months ago). I only have to inform
you that if you will perform any further search you have to find
financial coverage by yourself as the coverage by insurance company of
Ilja for our search has expired as the search was finished by
identification of suitable donor (agreed by Wolfram Ebel). I understand
that transplant is planed to be performed in your center and this is why
I send this documentation to you but we have no ask from the family to
do that as I was not informed by them (other than on TV - negative
selection for our center). Also as to financial coverage I have to ask
insurance company for financial coverage of transplant performed in our
center. I am not a partner of insurance company to ask this for that
family in this situation for procedure in any other center in Czech
Republic or elsewhere. That is the issue for family and proper insurance
company. That is why I could not send you any authorisation, I do not
have any, I could not ask for any, ...
I also could not authorise your center from many reasons. One very
important is that I have not been asked to do that by the family. To be
honest I have not heard from them for months. Other- there is no need
for any authorisation as you know family could decide by themselves
where they would like to go for transplant.

yours sincerely
Petr Sedlacek


----- Original Message ----- From: "Eliane Gluckman"
<eliane.gluckman@sls.ap-hop-paris.fr>
To: "Petr Sedlácek" <petr.sedlacek@lfmotol.cuni.cz>
Sent: Wednesday, November 09, 2005 8:30 AM
Subject: Re: Patient Mracek


> Thank you for your answer I think that the parents prefer to have
> their child transplanted in our unit. Could you help them to have the
> authorization from the insurance and could you send me all the details
> including the typing and the results of the donor search. I need also
> a letter from you that you authorize our center to take in charge the
> donor search and to put the patient on our waiting list Sincerely
> Eliane Gluckman
>
> Petr Sedlácek a écrit:
>
>> Dear Eliane, I understand this your letter. It is OK with me if
>> parents will
>> decide to be transplanted wherever they want. They also contacted
>> Wolfram
>> Ebell in Berlin with whom we have been for this in close contact and we
>> therefore did search couple months ago and have found fully matched
>> donor
>> (french by the way). This donor is still reserved for Ilja (even
>> pretty long
>> time). Parents declared from the very beginning that they do not want
>> Ilja
>> to be transplanted at our center. This is not our deal that insurrance
>> company decided not to cover for him a procedure abroad when it could be
>> performed in our country as well. We will be happy to communicate
>> with you
>> or Wolfram as much as possible in medical point of view.
>> Yours sincerely,
>> Petr Sedlacek
>>
>> ----- Original Message ----- From: "Eliane Gluckman"
>> <eliane.gluckman@sls.ap-hop-paris.fr>
>> To: <petr.sedlacek@lfmotol.cuni.cz>
>> Sent: Friday, October 28, 2005 2:00 PM
>> Subject: Patient Mracek
>>
>>
>>> Dear Dr Sedlacek and Dr Star
>>> I have seen at my consultation your patient Mracek Ilja who is
>>> affected by
>>> a severe and rare form of Fanconi anemia  with a FANC B mutation. The
>>> family came to our unit for an indication of Bone Marrow transplant
>>> with
>>> an unrelated donor. They are very anxious because they are aware of the
>>> poor prognosis of unrelated transplants in FA. I think that this
>>> patient
>>> should be transplanted as soon as possible because he is already very
>>> aplastic and there is a high risk of leukemia. The donor could be
>>> either
>>> an unrelated 10/10 matched donor or a cord blood donor . We have been
>>> changing our protocols very often , the last one includes low dose
>>> busulfan, low dose cyclophosphamide, Fludarabine and ATG for
>>> conditioning
>>> and cyclosporine MMF for GVH prevention. If you agree we can transplant
>>> this patient in our unit and send him back to you as soon as it is
>>> possible. To do that we need an agreement from you. I really think that
>>> transplant in this particular disease needs a lot of experience because
>>> the DNA defect  leads to major complications especially if GVH
>>> occurs. We
>>> have now transplanted more than 150 patients with FA although we are
>>> very
>>> far from having 100%success rate we have been slowly improving with
>>> time.
>>> If you choose to transplant this patient in your center we would of
>>> course
>>> give you the best advise we can if you need it. Hope to have a prompt
>>> answer from you . The family will probably enter in contact with you.
>>> Sincerely  Best regards Eliane Gluckman
>>>
>>
>>
>>
>
>
>