Help child with rare disorder visit a clinic!: Difference between revisions
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|feature_image=File:jane_kim_family_cropped_Large.jpg|A dup15q family who has been helped by a clinic. | |feature_image=File:jane_kim_family_cropped_Large.jpg|A dup15q family who has been helped by a clinic. | ||
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File:jane_kim_family_cropped_Large_Large.jpeg|A dup15q family who has been helped by a clinic.,File:justin_factoid_6_Large_Large.jpeg|,File:clinic_pic_Large.jpg|Did you know?,File:2018maxsilvaeeg_web_Grid7_Large.jpg|Max getting an EEG at one of our Clinics,File:maxsilvaeeg_web_Large.jpg|Max getting an EEG at the dup15q clinic.,File:justin_factoid_6_Large.jpg|Did you know?,File:annabelporath_Large.jpg|Annabel | |||
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|geo_id=6252001}} | |geo_id=6252001}} | ||
Latest revision as of 08:48, 6 August 2023
| Organization | Dup15q Alliance |
|---|---|
| Region | United States |
| Website | Website |
| ProjectLeader | Dup15q Alliance |
| Linked Problems & Solutions
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We have facilitated the establishment of 9 dup15q clinics around the United States. Our goal is for each of our 900 families be able to visit a clinic to receive the best medical care available for their children with this rare disorder. Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome. Symptoms of this rare genetic disorder include autism, seizures and developmental delays.
Challenge
Dup15q syndrome is a rare genetic disorder caused by a duplication of chromosome 15q11.2-13.1. Individuals with this disorder often have autism, seizures and global developmental delays. Parents have a difficult time finding information and medical care specific to dup15q due to it's rarity. Dup15q Alliance provides education and support for those affected by dup15q and encourages research and targeted treatments.
Long-Term Impact
With focused evaluation and treatment of individuals with dup15q syndrome, more will be learned about this rare disorder. We will improve the lives now of those dealing with dup15q now with more effective therapies and diagnostic tools. Our hope is that clinicians and bench scientists will one day be able to create targeted treatments for dup15q syndrome.
References
Project Gallery
A dup15q family who has been helped by a clinic.
Did you know?
Max getting an EEG at one of our Clinics
Max getting an EEG at the dup15q clinic.
Did you know?
Annabel
