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[pdilorenzo]

3rd Thalassemia Support Foundation Conference
September 12th, 2009
http://helpthals.org/events/3rd_Annual_Conference.htm

Beverly Garland's Holiday Inn
4222 Vineland Avenue, North Hollywood, CA 91602-3399
http://www.beverlygarland.com

The 3rd Thalassemia Support Foundation Conference will be held on September 12th, 2009 at the beautiful Beverly Garland hotel located only a mile away from Universal Studios. The conference is directed toward Thalassemia patients, parents, and loved ones, as well as members of the medical community. The focus of the conference is to learn about recent advancements in Thalassemia care and to provide a unique opportunity to meet others who are affected by Thalassemia.  Dr. Elliott Vichinsky will be talking about the updated Standards of Care.  Dru Foote will update us on the pain study.  Since our panel session was so successful last time, we did it again this year.  In addition, we added another panel on insurance issues.

And like all previous conferences... Patients are FREE!!!

Thalassemia Support Foundation:
http://www.helpthals.org
The Thalassemia Support Foundation is a non-profit organization founded by patients, parents, loved ones, and friends affected by Thalassemia. The foundation provides hope, comfort and encouragement to those battling this disorder. At the heart of the organization is a strong desire to help improve the quality of life for all patients with Thalassemia. We volunteer our time to organize conferences, raise funds to educate the community, ensure patients and parents know the latest in care, and donate to the work of researchers. The foundation maintains a strong relationship with the medical community that provides diagnoses, treatment and care.

[Zaini]

Hi Pdilorenzo,

Thanks for the info,i hope our members from US will be able to benefit from the conference.

Zaini.

[pdilorenzo]

http://helpthals.org/events/3rd_Annual_Conference.htm

The event page has been updated. The schedule of events has been posted as well as the invitation and registration form. You are now able to download, fill out, and send back the registration form to attend this wonderful conference. And, of course,

PATIENTS ARE FREE!!!

We have put together a great conference.  Dr. Elliott Vichinsky will be talking about the updated Standards of Care.  Dru Foote will update us on the pain study.  Since our panel session was so successful last time, we did it again this year.  In addition, we added another panel on insurance issues.

Discounts are available to people who register before August 31st, 2009

[Zaini]

Thanks for the info,i can only dream about it  I'd love to meet Di Vichinsky some day,may be our members from US might be able to attend it.

Zaini.

[Lena]

".......patients with this terrible disease..."

Don't you think you should replace the word "terrible" ?

Then again, that may be the way non-thals see it -  but for a Support Foundation to talk like this, about a terrible disease...that is a little contradictory with its aim to help thals lead a normal life, isn't it?

Lena.

[Andy]

I also prefer to see the word disease replaced with disorder to more accurately portray what thalassemia is. It is a genetic disorder. Words can be subtle in their ability to plant preconceived notions in the minds of people, so we do need to give some thought to how we speak about thal. When people hear the word disease, they often think they can contract it through contact and we really want to avoid this notion.

I would also like to highly recommend this conference to those who may be thinking about attending. Dr Vichinsky gives a great talk that is complete and up to date on the current thinking about treating thalassemia. This is something that can benefit all involved with thal.

[pdilorenzo]

I agree with both of you.  Not sure how the text go to that point.  The Thalassemia Support Foundation's mission statement states:

The Thalassemia Support Foundation is a non-profit organization founded by patients, parents, loved ones, and friends affected by Thalassemia. The foundation provides hope, comfort and encouragement to those battling this disorder. At the heart of the organization is a strong desire to help improve the quality of life for all patients with Thalassemia. We volunteer our time to organize conferences, raise funds to educate the community, ensure patients and parents know the latest in care, and donate to the work of researchers. The foundation maintains a strong relationship with the medical community that provides diagnoses, treatment and care.

Thanks for the feedback!