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  #1  
Old Thu Jan 24, 2013, 12:07 AM
Marrowforums Marrowforums is offline
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One-day Patient Conference in San Francisco, CA, July 20, 2013

A free one-day patient conference will be held in San Francisco, CA on Saturday, July 20, 2013. The conference, hosted by the Aplastic Anemia & MDS International Foundation (AA&MDSIF), is one of six one-day patient conferences in 2013.

This will be a multi-track conference for AA, MDS, and PNH patients and their families. Those who live in the west should plan to attend this conference or the April conference in Phoenix, Arizona.

The 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.

Conference attendance is free. Breakfast and lunch are included. Discounted hotel rates are available to those who want to stay overnight.

Conference Program

Come hear about the latest information about diagnosis, treatment (including transplants), and medical research from leading experts, including:
  • Dr. Rafael Bejar, University of California San Diego
  • Dr. Carolyn Matthews, Baylor University Medical Center
  • Dr. Laura Michaelis, Loyola University Medical Center
  • Dr. Timothy Pearman, Robert H. Lurie Comprehensive Cancer Center
  • Dr. Michael Pulsipher, University of Utah
  • Dr. Bart Scott, Fred Hutchinson Cancer Research Center
  • Dr. Jamile Shammo, Rush University Medical Center
Patients and family members will also 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
A special lunch program will let conference attendees meet and talk, with an emphasis on ways to stand up for your health.

Living with Aplastic Anemia, MDS or PNH

When:
Saturday, July 20, 2013, from 8:30am to 5:00pm
Check-in begins at 7:30am.
Where:
Hyatt Regency Santa Clara (Google map)
5101 Great America Parkway, Santa Clara, CA 95054
408-200-1234 (main), 888-421-1442 (toll-free registration)

Discounted hotel rates are available if you make reservations by Friday June 28, 2013.
Hotel parking is free.
See other hotel information on the AA&MDSIF event page.
Registration:
Use the online registration form to register for the conference.
The registration deadline is Wednesday, July 10, 2013.

For more information see the AA&MDSIF event page.

If you plan to attend this conference, post in this thread to let other attendees know to look for you!

After the conference, let us know what you thought of the event.
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Old Wed Jun 12, 2013, 07:23 PM
Marrowforums Marrowforums is offline
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At the conference Dr. James Huang, a pediatric hematologist from UCSF Benioff Children's Hospital, will lead For Kids Only, a workshop for children and teens (ages 6 to 16) with bone marrow failure disease, as well as for siblings and children of parents with these diseases.

In the afternoon Dr. Huang will be meeting and talking with parents in a Parents Only Q & A Forum. This is a great way for parents to meet other parents and have questions answered.
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  #3  
Old Sat Jul 6, 2013, 01:09 PM
NLJabbari NLJabbari is offline
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Aamds San Francisco Conference

Hello Everyone!

I just wanted to let you know that my family and I will be attending SF Conference. We will be joined by another local AA Family as both our children who are now young adults; were diagnosed around the same time. We have traveled this road together thus far.

I would like to know if anyone else will be attending so that we can perhaps meet and say hello.

Thanks
__________________
06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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  #4  
Old Sat Jul 6, 2013, 01:34 PM
Neil Cuadra Neil Cuadra is offline
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Ruth and I will be at the conference in San Francisco. We look forward to seeing you and your family.
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Old Sun Jul 7, 2013, 01:11 AM
NLJabbari NLJabbari is offline
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__________________
06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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  #6  
Old Sun Jul 21, 2013, 04:01 PM
Neil Cuadra Neil Cuadra is offline
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The San Francisco conference was excellent, with very good speakers and a well-organized and well-run agenda. Ruth and I got to see "NLJabbari" and other patient families we know.

A number of families have posted here about the difficulty of making the transition from pediatric care to adult care as a child patient gets older, so I asked Dr. Huang from UCSF Benioff Children's Hospital about it. He explained that the best doctors and institutions make it a gradual rather than sudden transition. Over the time of treatment they help a teen patient to gain more and more understanding of their illness, ask questions themselves, and participate more and more in their own treatment planning and care. If they are then introduced to an adult care provider by their pediatric doctor it can be much easier for them to adjust to the changes. It's also possible, where treatment center policies permit and where legal issues and insurance don't get in the way, for young patients to extend the time they are under the care of a pediatric practice, into their twenties.
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