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Old Tue Aug 1, 2006, 01:27 PM
Marrowforums Marrowforums is offline
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AA&MDSIF 2006 Patient & Family Conference

The annual Patient & Family Conference of the Aplastic Anemia & MDS International Foundation (AA&MDSIF) will be held in Nashville, Tennesee on August 2-4, 2006.

The more than 200 patients and their families who are expected to attend will hear about the latest research and treatment options for bone marrow failure diseases from leading medical experts. Related topics such as health and wellness issues and Medicare drug programs will also be discussed. See Schedule.

An important feature of the conference is the opportunity for attendees to ask their own questions of the doctors and other professionals. Representatives of pharmaceutical companies and health organizations will also be available to answer questions about drugs and other health issues.

In separate workshops, trained facilitators will lead discussions among patients, spouses, parents, and other caregivers to allow attendees to share experiences, exchange information, and support each other.

One highlight of the Conference this year will be the announcement of Marrowforms, whose opening was timed to coincide with the Conference. We hope to see conference attendees join us here at Marrowforms!

The AA&MDSIF is the oldest and largest patient advocate and support organization for bone marrow diseases and holds its Patient & Family Conference annually, each time in a different city. The chance for patients and their families to meet and discuss their situations face-to-face can be of immeasuable benefit. Marrowforms.org provides some of the same benefits 365 days a year by letting patients and famly members "meet" and "talk" over the Internet.
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Old Mon Aug 7, 2006, 10:30 AM
Marrowforums Marrowforums is offline
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The AA&MDSIF Patient & Family Conference is now over, as is the jointly held Nurses Conference. Even though this is the first year that a Nurses Conference was held in conjunction with the Patient Conference, it was well attended and both meetings were considered quite successful.

Patients and nurses attended separate sessions on August 3. Patients learned about their diseases and met each other in workshops. Nurses reviewed case studies and learned more about providing medical care for AA, MDS, and PNH patients.

On August 4, patients and nurses jointly attended panel discussions by seven of the world's leading bone marrow failure experts. The panelists gave reports on the latest research and treatments and answered questions posed by audience members in the multi-hour Question & Answer session that followed.
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Old Tue Aug 29, 2006, 04:29 PM
Marrowforums Marrowforums is offline
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Two pages of photos from the AA&MDSIF Conference in Nashville can be seen in the AA&MDSIF Patient and Family Conference Gallery.
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Old Wed Aug 30, 2006, 07:22 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
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As you can see from the photos, people had a good time at the Patient Conference in Nashville.

I made it a point to ask people there if they got what they came for, and everyone I asked said yes. Some attendees came to ask the medical experts specific questions, some came to learn more about bone marrow failure diseases in general, and some came to meet other patients.

What I found most interesting this year was the willingness of the doctors to say when they disagreed with each other. During the panel discussions, they politely explained where they had differences of opinion about treatment choices. I think they showed remarkable honesty, and doctors already have to be pretty brave to face a roomful of patients!

The back-and-forth discussions among the doctors made it clearer to me that treatment decisions require interpretation and that there still isn't enough research to know what's best for particular classes of patients, much less any individual patient.

Others who attended the Patient Conference are welcome to post here to comment on their experiences.
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Old Wed Aug 30, 2006, 08:55 PM
Loretta Loretta is offline
Join Date: Aug 2006
Location: Hurst, TX
Posts: 69
Nashville Conference Pics

Neil, Thanks for the pictures from the Nashville Conference. They reminded me of what a great, moving experience the conference was. Loretta
Loretta 58
MDS-RAEB dx 6/05
positive response to Vidaza 8/05 to 11/06
progressed to AML 11/28/06
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