STRESS. . . WHAT STRESS!
By Kelly Seymour
MY LIFE WITH MY LITTLE WARRIORS
By Gina Gareau-Clark
HUMOR HEALS
By Kelly Seymour
HAIRCUT
By Kelly Seymour
Send us your stories. Let us know if we can post them, and then please let us know if we can post your name and contact info. This would allow other parents to respond and communicate. We want to hear your funny stories, your stories of triumph or frustrations.
PHOTO GALLERY
Please join us as we showcase some of the beautiful families and their children affected by rare disease. For questions about how your family can be included contact us >>
See the photos >>
AN IMPORTANT PROJECT
Jean A. Turner
UNDIAGNOSED: SEARCHING
Lauren K.
LETTER FROM A MOM
Kathleen Dartez
LETTER FROM A FRIEND OF RARE DISEASE
Vickie Blavat
REGARDING THE WORLD RARE DISEASE DAY VIDEO
Mindy Cameron
LETTER FROM A
MOTHER OF 4
Kathleen Covey
Children's R.A.R.E. Disease Network would like to hear from you, please let us know how we are doing, if we are helping or what you would like to see from us! Contact us >>
FAMILY STORIES
INTERVIEWS
A MOTHER'S PERSERVERANCE
Ava Murray has a sweet smile. The six-year-old has Angelman’s Syndrome, also known as “happy puppet syndrome" because of the inappropriate happiness of these children, is the result of a deletion of the maternal 15th chromosome.
(22MB - 17:01)
NOT JUST GROWING PAINS
Tom and Shari Hume discuss their son Parker, who has Juvenile Dermatomyositis or JM, an autoimmune disease that affects just 5,000 children in the United States.
(29 MB - 19:52)
VIDEOS
Help Cure Juvenile Myositis in 2010
Undiagnosed By Esther Bautista
HADLEY HOPE - Niemann Pick Type C
MIRACLE FOR MATTHEW
SHRINKING BABY MAGGIE AGNEW BAFFLES DOCTORS
OUR CHILDREN, AND THE UNKNOWN PHANTOMS
RADICAL TREATMENT OF RARE CHILDREN'S DISEASE MAY LEAD TO AIDS/HIV CURE
TEENAGER DIAGNOSED WITH RARE BRAIN DISORDER ON A MISSION TO RAISE AWARENESS FOR RARE DISEASE
RARE DISEASE EFFORTS TAKING PLACE GLOBALLY!
DUCHENNE MD
THE FIGHT IS GLOBAL, BUT YOU CAN MAKE A DIFFERENCE LOCALLY – NIEMANN PICK TYPE C.
CHILDREN... WITH RARE DISEASE
A few personal interviews with M.O.M.s, the adorable Moorea and Delaney, and living with rare disease.
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ALEC BALDWIN INTRODUCES LYSOSOMAL DISEASE – GENETICS 101
DUCHENNE'S DISEASE
Parents working to make a difference in the lives of these special children. Educational, Insightful, very compelling.
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FACES OF WILLIAMS SYNDROME
Beautiful Children. Williams Syndrome a photo essay.
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FRIEDREICH'S ATAXIA AND FARA
A touching introduction to the disease and interviews with patients.
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