Conferences

Registration is now open - select the conference you'd like to attend

In 2012, AA&MDSIF is holding a series of six Living with Aplastic Anemia, MDS or PNH regional patient and family conferences in Washington DC, Los Angeles, Atlanta, New York City, Dallas and Chicago. These conferences build on the success and strong attendance of our 2011 conference series. Each program will provide you with answers from leading medical experts and the chance to connect and share with as many as 150 other patients and their caregivers. Every conference ends on a positive and celebratory note with our uplifting Celebration of Hope.

In addition, we will be in Seattle, WA for a collaboration with the Fred Hutchinson Cancer Research Center.  This will have a different format from the other six conferences.

These regional programs are spread throughout the year, and around the U.S., providing you and your family with an opportunity to attend a conference within just a few months of the patient’s diagnosis. The one-day regional format also makes it easier for family members and caregivers to attend at a time that's convenient to school and work schedules.

Three tracks provide participants with the most up-to-date thinking on disease and treatment options for aplastic anemia, myelodysplastic syndromes (MDS) or paroxysmal nocturnal hemoglobinuria (PNH). You will have access to leading bone marrow failure disease experts addressing important aspects of each disease, from advances in treatment, to strategies for living well with and beyond each disease. As always, there will be plenty of time to have your questions answered.

A special lunch program will encourage patients, families, and caregivers to meet each other, share ideas and experiences, and break down the sense of isolation often felt by those whose lives are impacted by these rare diseases. During this program, a special emphasis will be placed on sharing ways of standing up for your health to receive the best care and treatment available. We will also provide information on how you can join one of our Communities of Hope.

Living Well sessions in the afternoon will include topics you have told us that you want to learn more about that complement your medical care. Topics may include managing fatigue, coping strategies, nutrition, and complementary and alternative therapies for bone marrow failure disease patients.

Support Forums (New for 2012!)
These professionally-facilitated support sessions will bring together patients and family members with similar issues and concerns. They will provide plenty of time for talking, sharing, comparing and hearing how others are coping with the challenges of living with a bone marrow failure disease. Forums for patients are broken out by disease type. A special forum for caregivers only will also be included. A forum for parents of pediatric patients will be provided at our programs in New York, Atlanta and Los Angeles.

FOR KIDS ONLY (New York City program only)
This lively and interactive workshop is designed specifically for children and teens who have a bone marrow failure disease, their siblings and children of parents facing these diseases. Done in collaboration with staff from a local children’s hospital, this program will include a mix of fun, facts, art and even some medical science. The kids who participated last year learned a lot and made new friends their own age. Many have stayed connected with each other throughout the year. The program is perfect for children ages 6 to 16.

Celebration of Hope
Each conference concludes with a powerful and uplifting Celebration of Hope. This joyous gathering celebrates life and friendship. The program includes a survivor spotlight story, highlighting the struggles and triumphs of one of the many long-term bone marrow failure disease survivors who is successfully living with and beyond their illness. We also include a special presentation, including pictures, quotes and comments provided by conference participants in the weeks leading up to each conference. Be sure to come and celebrate your life and your courage with us.

You will leave the conference feeling informed, confident, empowered, and better connected to the bone marrow failure disease community in your geographic area. You will be inspired to be a strong advocate for your best health care and better connected to other patients and families as part of one of our Communities of Hope. Registration is FREE and includes meals and all materials; however, advance registration is required. Consider staying at the conference hotel the night before the conference and take advantage of the discounted rates we have negotiated on your behalf.