Randy-Ehlers-Danlos Syndrome type 9 (Occipital Horn Syndrome)
Randy Diagnosis: Ehlers-Danlos Syndrome type 9 (Occipital Horn Syndrome)
Entries by Season
Crowdrise fundraiser has begun!
A HUGE thank you to everyone who participated and supported Aware of Angels during this fundraiser and all other times! xoxo Calling on everyone!! 🙂 We have officially started a Crowdrise fundraiser for the next 30 days. We have families and children in over 15 united states and 3 countries that want us to come […]
Ava-1P36 Chromosome Deletion Syndrome
Ava: 5 years old Diagnosis: 1P36 Chromosome Deletion Syndrome USA
Ella Pauline Dignan-Dandy Walker Syndrome-In Loving Memory
Ella Pauline Dignan-In Loving Memory Diagnosis: Dandy Walker Syndrome USA
Rare Genomes Project-Genetic Testing Opportunity
We are thrilled to be collaborating with the Rare Genomes Project! If you are a patient or parent who had severe symptoms before the age of 13 I highly encourage you to reach out to them for a genetic testing opportunity. “The Rare Genomes Project aims to increase rare and undiagnosed families’ access to genomic […]
Special Partners
