Archived Events

DBA Family Day- Seattle, Washington

Seattle Children's Hospital

Save the Date: April 30, 2011

Time: 10:30am to 4pm

Come hear about DBA medical updates. Meet other patients and families affected by DBA at the Seattle Children's Hospital, Small Dining Room 2 (Please park and enter via Whale 5 Garage)4800 Sand Point Way NE, Seattle, WA 98115. Patients, families and health care providers are invited to attend. Lunch will be provided.Please RSVP by April 15 by phone at 206-987-7021 or email kathleen.mcgregor@seattlechildrens.org. Please include your name and phone number as well as the number planning to come. We look forward to seeing you!

What is DBA Family Day?DBA family day is a chance for families and friends affected by DBA to come together share experiences and learn from each other. It is also an opportunity to find out more about treatments, testing and managing DBA from medical experts with special interest in this disorder. Dr. Akiko Shimamura will begin the day with a presentation of background and general information on Diamond Blackfan Anemia. She will also provide an update on the progress being made in the search for the cause of DBA. Dr. Bert Glader, from Stanford, will discuss current medical treatments for DBA and explore new therapies for DBA. Dr. Laurie Burroughs will discuss current transplant options for children and adults with DBA. Dr. Siobán Keel, an adult hematologist, will discuss medical issues for adults with DBA. After lunch we will have a question and answer session and your chance to ask about any issues. Panel participants will be available to answer questions. Patients are encouraged to participate. Older children interested in hearing about DBA are welcome to attend the presentation and take part in the discussion.We welcome and encourage your participation in DBA Day 2011!

Click here for the Seattle DBA Family Day Flyer.

Please call Kathleen McGregor at 206-987-7021or email kathleen.mcgregor@seattlechildrens.org if you have any questions. We would love for you to join us!

 

DBA DAY - New York
Date: Saturday, November 13, 2010
Time: 9am - 4pm

DBA Day! At The Steven & Alexandra Cohen Children's Medical Center of New York (formerly Schneider Children's Hospital)

Join us for a day of learning about DBA. Topics to be discussed will include:
* Diagnosis
* Genetics and Reproductive Medicine
* Treatment - Corticosteroids and Transfusion Therapy
* Stem Cell Transplantation
* Iron Overload

Entertainment will be provided for the children. Lunch and snacks for all, no charge. Space is limited so please reserve early by calling/e-mailing:

Ellen Muir, MSN, CNS
877-DBA-NURSe (877-322-6877) or emuir@nshs.edu

 

DBA Family Day - Texas
Date: Saturday, November 6, 2010
Time: 9:00am - 4:00 pm

Children’s Medical Center Dallas & The University of Texas Southwestern Medical Center, Dallas Texas will sponsor its second DBA Family Day!

Free to everyone interested in DBA regardless of where you receive health care, but we need to know you are coming.

This day will bring DBA patients in the central and southwest United States and their families together for the purposes of becoming acquainted, sharing stories or experiences, and receiving up-to-date medical updates and news.

For more information, to suggest areas you would like to discuss, request translation services, AND to register to take part in this special day please contact Debbie Boger.

Debbie Boger, R.N.
(214) 456-6102            
deborah.boger@childrens.com
BoneMarrowFailure@UTSouthwestern.edu

For more information, please contact:
Deborah Boger, DBA Nurse Coordinator
214.456.6472 (Central Time)

 

DBA Family Day- California

Saturday, October 2, 2010
Time: 11am -4pm (lunch included)

Join us for a day of DBA research updates, and more!
Lucile Packard Children's Hospital at Stanford, Palo Alto, California.

We have an exciting agenda planned and welcome your input, please let us know if there is a topic you are interested in hearing about. This event is open to anyone (patients, families, friends, adults and children) interested in DBA. There is no charge to participate in this event.

For questions, requests, or to register, please email:
Kirsten Mouradian, R.N. & Dr. Bert Glader at kmouradian@lpch.org
(650) 724-2448 (Pacific Time)

 

7th Annual National Family Retreat

Camp Sunshine

Lake Sebago, Maine

Date: July 11-16 2010

For more information click here.