Bohring-opitz Syndrome (bos) Awareness Day
Each year, Bohring-Opitz Syndrome (BOS) Awareness Day takes place on April 6th. The primary goal of the day is to inform both the public and the medical community about the condition, as well as families of those with BOS.
Bohring-Opitz Syndrome is a rare genetic disorder. It is extremely uncommon. Around 150-200 cases have been reported around the world. This syndrome is confirmed by genetic testing, and it is caused by a mutation in the ASXL1 gene. Respiratory infections are the leading cause of death. BOS children can have feeding difficulties, persistent respiratory infections, sleep apnea, developmental delay, failure to thrive, stunted hair growth, abnormal hair length, and silent aspiration are all typical problems for children with BOS.
How to celebrate #bohringopitzsyndromawarenessday on a day that is #bohringopitzsyndromawareness
- colors, Wear Denim and Gold
- ***Follow on social media with #BOSaware#BohringOpitz, #BOSFoundation
- The Twitter link is https://twitter.com/bohring_opitz.com/bohring_opitz.html The link is https://twitter.com/bohring_opitz.com/bohring_opitz.com/bohring_opitz.com/bohring_opitz.com/bohring_opitz.com/bohring_opitz
Bohring-opitz syndrom awareness day is the first day in history
On April 6, 2015, Taylor Gurganus, co-founder of the BOS Foundation, organized the first BOS Awareness Day. BOS Awareness Day was chosen on April 6th because it is the anniversary of the first BOS Support Group's Facebook page's establishment. This Support Group helps parents and caregivers of those with this rare condition to connect with someone who shares their triumphs and challenges. Because most children with BOS Awareness have BOS Awareness, most children with BOS are looking like shiny, shiny objects, Parents from The Support Group selected gold to represent BOS Awareness because most children with BOS Awareness have BOS Awareness. They chose denim (jeans) because it represents rare illnesses and disorders. (jeans) is a rare disease.
BOS Foundation supports families and patients affected by the disease. The BOS Foundation supports families and patients affected by the disease. BOS is a virus that causes BOS.
- The family assistance services are also available in the United States
- BOS and its best therapies are being studied by the medical community's knowledge of BOS and its best treatments
- BOS' best practices and treatments are included in teaching and sharing information about the disease, as well as its best practices and treatments
- BOS' sense of community is also growing a sense of community around it
