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Old Thu Jan 24, 2013, 12:09 AM
Marrowforums Marrowforums is offline
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AA&MDSIF to Hold Six One-day Patient Conferences in 2013

The Aplastic Anemia & MDS International Foundation (AA&MDSIF) will hold six one-day conferences for AA, MDS, and PNH patients and their families in 2013, in six cities across the U.S.

Conference attendance will be free. Those who want to stay overnight can take advantage of discounted hotel rates. Plan to attend the patient conference closest to you.

Living with Aplastic Anemia, MDS or PNH - 2013 Conferences

Click links for conference threads.
  1. Phoenix, Arizona - Saturday April 6, 2013

  2. Houston, Texas - Saturday April 20, 2013

  3. Cleveland, Ohio - Saturday June 22, 2013

  4. San Francisco, California - Saturday July 20, 2013

  5. Boston, Massachusetts - Saturday, September 7, 2013

  6. Tampa, Florida - Saturday, November 9, 2013
Agenda

Each conference will include parallel (simultaneous) sessions on AA, MDS, and PNH, sessions to help you live with and cope with these diseases, and professionally-facilitated support sessions with your peers.

At each conference patients and family members will be able to
  • meet medical experts face-to-face
  • hear about the latest treatments and medical research
  • learn skills for managing life with a bone marrow failure disease
  • have your questions answered
  • learn how to be your own advocate for the best care
  • get to know other patients and family members like yourselves
  • attend professionally-facilitated support sessions
  • let children ages 6 to 16 attend a For Kids Only Workshop (locations to be determined)
Registration is open for all conferences. Click a link above for complete information and registration links.

To identify other attendees you can meet, post in the Marrowforums thread for the conference you plan to attend.
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Old Sat Jan 26, 2013, 07:43 PM
Darice Darice is offline
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Question Conference attendance?

I would so love to be able to go to one of these! Have many here been able to go? Was it valuable to you? Did you learn much that you haven't been able to find out through other sources? Or was it more moral support . . . actually talking to people facing similar issues?

Wish there was one closer to us . . . it would probably be easier to drive than fly in lots of ways, but don't think Jens would be up to such a long drive. Guess I need to hear some positive comments before I spend much time looking into it.

Thanks!
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hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].
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Old Sat Jan 26, 2013, 10:53 PM
Neil Cuadra Neil Cuadra is online now
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Quote:
Originally Posted by Darice View Post
Have many here been able to go?
My wife and I have been to a number of them, starting in 1998 and most recently in 2012.

Quote:
Was it valuable to you? Did you learn much that you haven't been able to find out through other sources?
Even though my wife and I stay informed about these diseases, we learn new information every time we go to a patient conference. And the chance for patients to hear from so many of the country's leading experts and ask them questions is hard to beat.

Quote:
Or was it more moral support . . . actually talking to people facing similar issues?
That too. We've made new friends at each conference and when my wife was sickest we really depended on those friendships and kept each other's spirits up.

Too bad there's no conference in Denver (or even Albuquerque) this year, which would be a lot easier for you to get to.
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Old Sun Jan 27, 2013, 12:17 PM
Darice Darice is offline
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Location: Colorado Springs, CO
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I'll keep kinda looking in to it, I guess . . . just the logistics of getting there is probably the biggest hurdle. They didn't have a close one last year, either. He was diagnosed in May 2011 and I don't think there was a close one then . . . I had really been hoping that it would have come around to Denver or Omaha or someplace we could get to easily . . . there really has been nothing central since he was diagnosed, and there has got to be a bunch of us out here.

I would love to go, but I guess I'm also kinda skeptical that we would gain that much . . . Jens' options are pretty limited and maybe we're better off now to just enjoy life . . . go to Vegas or Disneyland instead.
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hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].
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