For Families

Being diagnosed with a rare, chronic disorder may be a challenging and overwhelming journey for patients and their families and friends. Not knowing where to turn or how to proceed faces all of us at many times as we manage the many physical, emotional, and social aspects of living with Diamond Blackfan Anemia. Knowing where to seek “expert” medical advice and participating in the DBA registries, clinical trials, family meetings, and email support groups benefits all DBA patients. For most, knowing you are not alone and that there are others that feel and “know” what you are experiencing is an integral part of the coping process. We strongly encourage you, our DBA family, to reach out to us and get involved. Our hope is that this site provides some avenues for you and your family to assist you on this journey.

We invite you to share your personal experiences with our DBA family. To add a patient’s photo, your family’s link, news story links, and DBA fundraising announcements to our site, please email the information to DBAFoundation@juno.com

DBA Family Websites

A

Adahlia
Jamie Andrews
Avari Askew

B

Kevin Ballina
Lizzie Bell
Alexandra Braue
Mya Brown
Ashlynn Bruce
Gabriel Bruton
Jacob Buckmaster
Katie May Burnett

C

In memory of Haley Callahan
Jayme Cass
Chasity Chandler

D

In memory of Keilani Delgado
In memory of Lakshmi Desai
Doug Dickson Jr.
Journey Dickson
Bowen Downey

F

Tori Flahavan
Patrick Foster

G

James Thomas Garrett
Liam Gorman
Peyton Green

H

Alexander Hays
Richard Heflin
Alice Holewinski
Lydia Holewinski
MayRose Hurst

J

Chloe Janow
Madison Johnson
Thomas Johnson

K

Jodi Kiesewetter
Kendra Kofron

L

Amelia Lamb
Bailey Lightner

M

Emmalynn Matthies
Mia McPoland
Kylie Jae Monica
Kylie Jae Monica

N

Jakob Ngatai

P

Kathryn Patton
McKindree Patton
Jack Pereira

R

Maggie Rudnicki
Ian Rutledge

S

John Shannon IV
Coleson Shaw
Jillie Snyder
Lily Soto
Ruby Swanson

T

Katie Trebing

W

Atleigh Whitman
In memory of Brett Wiegref
Lola Willford

Facebook

To “Like” the Diamond Blackfan Anemia Foundation on Facebook click here.
To join “DBA Family Group” on Facebook click here.
To join “Fundraising for Diamond Blackfan Anemia” click here.

Twitter

Do you twitter? If so, follow us and keep up to date on Diamond Blackfan Anemia tweets at http://twitter.com/DBAFoundation