Bohring-Opitz Syndrome/ASXL1
@bohring-opitz.bsky.social
Providing information about Bohring-Opitz Syndrome (BOS) and awareness through a worldwide exchange with guidance and parental support at www.bohring-opitz.org
Newly diagnosed with Bohring-Opitz Syndrome/ASXL1? Join the BOS Parent Support group.
Newly diagnosed with Bohring-Opitz Syndrome/ASXL1? Join the BOS Parent Support group.
BOS Awareness: Inclusion, Advocacy, and Equity
What would it be if all our children were born healthy .... We love our children like any other and do everything to make their lives as livable and beautiful as possible. We really want to embrace every unique trait of our loved ones, while steering…
What would it be if all our children were born healthy .... We love our children like any other and do everything to make their lives as livable and beautiful as possible. We really want to embrace every unique trait of our loved ones, while steering…
BOS Awareness: Inclusion, Advocacy, and Equity
What would it be if all our children were born healthy .... We love our children like any other and do everything to make their lives as livable and beautiful as possible. We really want to embrace every unique trait of our loved ones, while steering clear of using terms like "dysfunction," "impairment," or anything that might sound like it’s really focusing on the medical side of things.
bohring-opitz.org
April 6, 2025 at 9:51 AM
BOS Awareness: Inclusion, Advocacy, and Equity
What would it be if all our children were born healthy .... We love our children like any other and do everything to make their lives as livable and beautiful as possible. We really want to embrace every unique trait of our loved ones, while steering…
What would it be if all our children were born healthy .... We love our children like any other and do everything to make their lives as livable and beautiful as possible. We really want to embrace every unique trait of our loved ones, while steering…
More than you can imagine - Bohring-Opitz Syndrome/ASXL1.
#rarediseaseday #rdd2025 #bohringopitz #bosaware
#rarediseaseday #rdd2025 #bohringopitz #bosaware
February 28, 2025 at 8:41 AM
More than you can imagine - Bohring-Opitz Syndrome/ASXL1.
#rarediseaseday #rdd2025 #bohringopitz #bosaware
#rarediseaseday #rdd2025 #bohringopitz #bosaware
February 28, 2025 at 5:16 AM
Your Interactive Visual Aid (IVA) on the most common symptoms of Bohring-Opitz Syndrome (BOS), which have been described in the medical literature and case studies in recent years between 2006 – 2024. bit.ly/VisualAidBOS
ASXL1/Bohring-Opitz Syndrome - Signs & Symptoms
interactive poster
bit.ly
January 19, 2025 at 7:53 PM
Your Interactive Visual Aid (IVA) on the most common symptoms of Bohring-Opitz Syndrome (BOS), which have been described in the medical literature and case studies in recent years between 2006 – 2024. bit.ly/VisualAidBOS
Newly diagnosed with Bohring-Opitz Syndrome?
Get support from our network of families around the world. In our support group we can offer you information, support and advice on any question or concern you have related to Bohring-Opitz Syndrome. bit.ly/BOSgroup
Get support from our network of families around the world. In our support group we can offer you information, support and advice on any question or concern you have related to Bohring-Opitz Syndrome. bit.ly/BOSgroup
January 19, 2025 at 7:50 PM
Newly diagnosed with Bohring-Opitz Syndrome?
Get support from our network of families around the world. In our support group we can offer you information, support and advice on any question or concern you have related to Bohring-Opitz Syndrome. bit.ly/BOSgroup
Get support from our network of families around the world. In our support group we can offer you information, support and advice on any question or concern you have related to Bohring-Opitz Syndrome. bit.ly/BOSgroup