Quote:
Originally Posted by Neil Cuadra
Laura,
Yes, instead of a three-day national Patient Conference the AA&MDSIF has switched to six one-day regional conferences. They line up AA, MDS, and PNH experts for each conference and hold sessions similar to those in the past, covering both the medical aspects of these diseases and how to "live well" with them. Some of the regional conferences have a kid's program too.
With only a single day, they no longer have time for the patient-to-patient support group meetings that were held at the national conferences, nor a national Hope, Steps & A Cure walk. They also skip the sessions that introduce the three diseases for those who are newly diagnosed.
Luckily, there are substitutes that make up for these differences: - Marrowforums provides an online meeting place for patients and caregivers.
- AA&MDSIF supporters have organized their own Hope, Steps & A Cure walks in their cities.
- Newly diagnosed patients can view disease overview webinars at the AA&MDSIF Online Learning Center.
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Thanks Neil, I appreciate the information! It is nice they have more options for people (different parts of the U.S.) but it is sad to lose those options too! Thankfully, there are other resources!
Well if there were enough of us in Minneapolis, I am sure we could set something up, or I could probably get something set up for a mini get together...let me know...and of course it depends on these stupid plts and what is happening with that...I would totally be game to go..
Laura