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3rd TSF Conference, North Hollywood, California, September 12th, 2009

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Andy Battaglia:
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:


--- Quote ---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.
--- End quote ---

Thanks for the feedback!

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