New Orleans, Louisiana
You are not alone in your disease diagnosis. It is not too late—you can still register for the New Orleans, LA Conference. Join us for this FREE conference to build connections, learn information and leave with answers, feel support and have hope.
Speakers at the New Orleans, Louisiana conference on October 11th, represent prestigious national institutions and hospitals including the Johns Hopkins University, National Institutes of Health (NIH) Penn Presbyterian Hospital, Northwestern University, Cleveland Clinic, and Cancer Treatment Centers of America.
If you're planning to attend, registration for all conferences is now open.
2014 Conferences
Aplastic Anemia, MDS & PNH Regional Conferences: Meeting You Where You Are 2014
The AA&MDSIF Regional Conferences bring nationally recognized leaders in bone marrow failure diseases to six conferences around the country. Come to hear medical experts and researchers present the current thinking on the disease, diagnosis, and treatment of aplastic anemia, MDS and PNH. We have already had four successful meetings in Los Angeles, CA; Philadelphia, PA, Detroit, MI and Louisville, KY. To learn more about Louisville, KY or other city conference speakers visit our website www.aamds.org/conferences. Registration is open now!
These regional events are spread throughout the year and around the U.S., providing you and your family an opportunity to learn from leading experts and meet other patients and their families within just a few months of a patient’s diagnosis.
Mark your calendar now!
•New Orleans, LA 10/11/2014
•Miami, FL 11/08/2014
Quotes from conference attendees:
Finding an organization that is patient centered was hard. I always felt rushed at medical appointments but the AAMDS Foundation has helped me understand my disease with information that was easy to read. The patient educator took time with me and made me feel important. Perhaps you are like me reluctant to participate in a conference but these conferences exceeded all expectations. It is worth the drive, time and investment in yourself to participate. -- Anonymous
I Learned more today at this conference than I have anywhere else! – Mary Milleresse
Attending this conference, learning from the experts and most of all meeting others that truly understand what it’s like to have one of these diseases has helped me finally learn to breathe easier! –Anonymous
I have been an oncology nurse for 20+ years and have never heard such a good explanation of what MDS is. The AA&MDS IF always brings speakers that the attendees can understand and approach if they have questions. -Judy
I now know this disease shouldn’t stop me from living life as best I can. – Evelyn
Webinars & Webcasts: The Online Learning Center brings the experts to your computer!
We have several programs that are now available for viewing via the Online Learning Center. We know that information on bone marrow failure diseases can be difficult to understand. For this reason we have created interactive learning modules to help beginners gain an understanding of the basics, or provide more advanced learners a refresher. The topics available are listed below.
|
Topic |
Language |
|
Aplastic Anemia |
English |
|
MDS |
English |
|
Blood and Bone Marrow Basics |
English |
|
Types of MDS |
English |
|
Clinical Trials |
English, Spanish |
|
PNH |
English |
|
Bone Marrow Transplant Tutorial |
English , Spanish |
Check our Online Learning Center for new webinar topics, interactive learning modules or to review interviews or recordings from our experts. The recordings of the Los Angeles and Philadelphia Webcasts are now available for viewing.
Webinars (Open for registration)
The Affordable Care Act: What does it mean for Aplastic Anemia, MDS and PNH patients
Brendan Bietry
Patient Advocate Foundation, Director of External Relations/Bilingual Case Manager
10/6/14
2:00PM
Aplastic Anemia: Why me? Understanding who gets it and why
Dr. Christopher Cogle, MD
University of Florida
10/13/14
3:00PM
Bone Marrow Transplant for MDS and Other Bone Marrow Failure Diseases: Before, During and After
Dr. Christopher Cogle, MD
University of Florida
10/13/14
3:00PM
PNH FAQ Living Well Forum for Patients & Families
Dr. David Araten
New York University-School of Medicine
12/18/14
1:00 pm
The AA&MDSIF Online Learning Center has dozens of recorded programs addressing topics such as:
Aplastic
Anemia
MDS
PNH
Blood
Transfusions
Caregivers
Clinical
Trials
Stem
Cell Transplantation
Living
Well
Nutrition
Pediatric
Issues
Self
Advocacy
Virtual meetings
A virtual meeting is one that occurs when two or more people or groups of people are connected remotely for a meeting or event rather than personally attending at one meeting site. The connection of different groups in different locations at the same time is made possible by using high-speed cable, phone lines, satellite or the Internet to transfer images, content and audio beyond the geographic location where the actual event is occurring.
One of the main features that draw audiences to our conferences are the educational presentations from our experts. This year we will be offering three (3) virtual meetings that will provide an opportunity for persons unable to make it to our conferences the opportunity to participate remotely.
Do you like face-to-face conferences but were not able to attend one of the Patient and Family Conferences this year? Like its face-to-face counterpart, the virtual meeting will run on a real-time schedule. The online conference will feature a disease specific academic track:
PNH Virtual Meeting: November 8, 2014 9am ET
PNH is a rare and serious blood disease that causes red blood cells to break apart. Doctors call this breaking apart "hemolysis". It happens because your blood cells are missing a protein that protects them from your body's immune system.
When your red blood cells break apart, the hemoglobin inside them is released. Hemoglobin is the red part of red blood cells. Its job is to carry oxygen around your body. The release of hemoglobin causes most PNH symptoms.
The disease can affect people of any age. It may lead to aplastic anemia, myelodysplastic syndromes, or acute myelogenous leukemia.
9:00 - 10:30 am
PNH: Current Thinking on the Disease, Diagnosis, and Treatment
10:45 am - 12:15 pm
New Directions in PNH Treatment: What’s on the Horizon?