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PNH Paroxysmal nocturnal hemoglobinuria

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Old Sun Aug 26, 2007, 08:12 PM
breitenr breitenr is offline
Join Date: Aug 2007
Posts: 2
Red face Thank you

I want to take a moment and thank all of you who made me feel so welcome at the Las Vegas meeting earlier this month. Some of you may remember me, my name is Rick and I live just outside of Orlando. I do not have any family members diagnosed with PNH but was at the conference to learn more about this condition. I don't believe I have ever met a group of people more knowledgable about their disease, more willing to share their stories or more deserving of a breakthrough treatment - if not a cure! I especially want to say hello to Dan (and family), Jenny and Mary. There were many others I met (like the nice couple from Orlando and the patient and her friend from Northern California) but unfortunately their names escape me. Although the original reason for my visit did not work out, I will continue to follow your journeys on this site and wish each of you much strength, good health and all the best life has to offer. Fondly, Rick
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Old Mon Nov 19, 2007, 09:34 PM
Splitz Splitz is offline
Join Date: Nov 2007
Location: Central coast of CA, USA
Posts: 4

There are meetings? And one so close to home, rats, missd it. Who arranges these, and where can I obtain more information on them?


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Old Mon Nov 19, 2007, 10:08 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,496
The conference in Las Vegas was the annual Patient and Family Conference of the Aplastic Anemia & MDS International Foundation (AA&MDSIF).

There's information about this year's conference in our AA&MDSIF 2007 Patient & Family Conference thread. Not only do patients with AA, MDS, and PNH meet each other, but they hear from and talk directly with the professionals who specialize in these diseases.

We've posted photos from the last two conferences; look for the PNH patient group photos from this year (in Las Vegas) and last year (in Nashville).

Next year's meeting will be about the same time of year and is planned for Washington, DC.

In the meantime, you'll want to identify resources available to you, such as Marrowforums, the AA&MDSIF, the PNH Support Group, the PNH Research and Support Foundation, and PNH Source (an Alexion Pharmaceuticals site).
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