Bohring-opitz Syndrome (bos) Awareness Day
Every year, Bohring-Opitz Syndrome (BOS) Awareness Day takes place on April 6th. The day's aim is 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 very rare genetic disorder. Around 150-200 cases have been reported around the world. This syndrome is confirmed by genetic testing and is caused by a mutation in the ASXL1 gene. Respiratory infections are the leading cause of death. Children with BOS can have feeding difficulties, recurring respiratory infections, sleep apnea, developmental delay, failure to thrive, stunted hair growth, abnormal hair length, and silent aspiration, according to Wilm's Tumors, brain abnormalities, and silent aspiration.
#bohringopitzsyndromawarenessday is the most commonplacementday in the United States
- BOS Awareness's colors, Wear Denim and Gold, are BOS Awareness's colors
- ***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_opitzcom/bohring_opitz
Bohring-opitz syndrom awareness day is the longest in the country's history
On April 6, 2015, Taylor Gurganus, co-founder of the BOS Foundation, organized the first BOS Awareness Day. 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 helps parents and caregivers of those with this rare condition to connect with someone who shares their triumphs and challenges. Because the majority of 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 selected denim (jeans) because it represents rare diseases such as rare diseases.
Through: The BOS Foundation supports families and patients affected by BOS. BOS is a disease that has caused by BOS. The BOS Foundation supports families and patients affected by the disease.
- The family assistance services are provided by family assistance services
- Supporting research that improves the medical community's understanding of BOS and its best treatments is essential
- BOS, as well as its best practices and treatments, are among the many aspects of teaching and sharing information about the disease and sharing of information about it
- A sense of community surrounding BOS is also increasing a sense of community