skygirl
Our prayers were answered:)
Member since 6/05 4919 total posts
Name:
Erica
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repost from families helping friends- please help- sorry to repost very important
Hi everyone,
I have a few friends that have this blood disease Thalessimia/ Cooleys Anemia and go through great lengths to stay healthy.
They have to inject a medication into thier bodies from 8-10 hours 5x a week during sleeping time with this drug approved they can just take it orally. This drug is used in Europe.
Thier treatment is very time consuming and there is hope for a better way with a new drug.
PLEASE find a moment to sign this petition.
Click here to sign petition!!!!!!!
Thanks so much!
Erica
Sorry to repost but this is very important
( scroll down for more info)
Dear Friend:
On Thursday, September 29, the Blood Products Advisory Committee will
review the New Drug Application for the oral chelator Exjade (ICL670).
The Committee will then make a recommendation to the FDA as to whether to approve Exjade for use in the U.S. In most cases, the FDA follows the
recommendation of such Committees; therefore, a positive response from
this Committee will most likely mean that this oral chelator will be
available by prescription in the U.S.
This meeting is open to the public and includes a period for public
comment. We must make sure that the voice of the thalassemia community
is heard concerning the desperate need for alternative treatments to
Desferal.
Representatives from CAF and TAG will be attending the meeting to express support for Exjade. We encourage all interested parties (parents, family
members, doctors) to do likewise. There are a number of ways in which
you can express your support:
1) If you are able to physically attend the meeting, we encourage
you to do so. The meeting will be held at the FDA, 5630 Fishers Lane,
Room 1066, Rockville, Maryland. Please note that those wishing to make
oral statements must inform the Committee of their intentions before
September 22. (Contact information below.) Those willing to speak should
submit a brief statement of the general nature of the evidence or
arguments they wish to present, the names and addresses of proposed
participants and an indication of the approximate time requested to make
their presentation.
2) If you are unable to attend, you can still submit a written
statement about the need for an oral chelator. Written submissions must
also be submitted before September 22. (Contact information below).
Whether you attend or not, we ask that you sign our online petition by
September 21, 2005.
The petition is at Click here: GIFT OF LIFE
CAF will submit these petitions at the September 29 meeting.
Written statements and requests to make an oral statement should be sent
before September 22 to:
Donald W. Jehn
Center for Biologics Evaluation and Research (HFM-71)
Food and Drug Administration
1401 Rockville Pike
Rockville, MD 20852
301-827-0314
[email protected]
This meeting is vitally important. While we believe that Exjade has a
very good chance of winning approval, it is still crucial that we let the
FDA know how important an alternative treatment of this type is to the
thalassemia community. Please help us in our efforts by making an oral
or written statement and by signing on to our petition.
Thank you.
Sincerely,
Frank Somma Gargi Pahuja
CAF National President TAG President
Message edited 9/17/2005 9:55:01 PM.
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MommyofG
just the girls
Member since 5/05 9461 total posts
Name:
Janice
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Re: repost from families helping friends- please help- sorry to repost very important
My DH had this as a kid but thankfully he has the minor and not the major- Had I been of european decent and a possible carrier our children could very easily get this, which one we dont know( major or minor) but its so sad,  I will go sign right now!
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skygirl
Our prayers were answered:)
Member since 6/05 4919 total posts
Name:
Erica
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Re: repost from families helping friends- please help- sorry to repost very important
Posted by girlygrl33
My DH had this as a kid but thankfully he has the minor and not the major- Had I been of european decent and a possible carrier our children could very easily get this, which one we dont know( major or minor) but its so sad, I will go sign right now!
Thank you- my really good friend has this and after knowing her for 8 yrs she is just starting to explain all of this to me. I met a bunch of her friends who have this disease and they were all so sweet. Its so complexed - it entails so much to stay healthy
I just want to help and I really appreciate ALL of you who signed this petition.
Thanks again
Message edited 9/17/2005 9:58:26 PM.
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