Bohring-opitz Syndrome (bos) Awareness Day
yndrome (BOS) Awareness Day takes place on April 6th each year. The day is designed to educate both the public and the medical community about the condition, as well as families with someone with BOS.
Bohring-Opitz Syndrome is a rare genetic disorder. Around 150-200 cases have been recorded around the world. This syndrome can be identified by genetic testing and is caused by a mutation in the ASXL1 gene. Respiratory infections are the most common cause of death. Children with BOS may 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 daily basis
- colors, Wear Denim and Gold. BOS Awareness's colors are Wear Denim and Gold
- ***Follow on social media with #BOSaware#BohringOpitz, #BOSFoundation
- The Twitter link is https://twitter.com/bohring_opitz.com/bohring_opitzhtml
The day is in the history of bohring-opitz syndrom awareness day
Taylor Gurganus, co-founder of the BOS Foundation, organized the first BOS Awareness Day on April 6, 2015. The first BOS Awareness Day was chosen on Facebook on April 6th because it is the anniversary of the founding of the first BOS Support Group on Facebook.. This Support Group enables parents and caregivers of those with this rare condition to connect with someone who shares their triumphs and challenges. Since the majority of children with BOS Awareness are wearing shiny, shiny objects, Parents from The Support Group selected gold to represent BOS Awareness because most children with BOS Awareness have BOS Awareness. Because it represents rare disorders, they selected denim (jeans) because it represents rare diseases.
Through: The BOS Foundation supports families and patients affected by BOS. BOS is a disease that has caused by BOS.
- Providers of family assistance services are among the services that are offering family assistance services
- Supporting research that improves the medical community's knowledge of BOS and its best therapies can improve the medical community's understanding of the disease and its best treatments
- BOS, as well as its best practices and therapies, is a topic that is increasingly discussed by educators and researchers alike
- A sense of community surrounding BOS is also growing in the sense of community surrounding BOS
