Providing information about Bohring-Opitz Syndrome and awareness through a worldwide exchange with guidance and parental support.

This awareness and advocacy page has been created by parents of children with Bohring-Opitz Syndrome who belong to the international private Facebook Group, called “Bohring-Opitz Syndrome support group”, that was started April 6th 2011. We now bring our knowledge and experience as parents and caregivers of BOS children forward in hopes to provide the most current resources available to new families of children with this disease.

Bohring-Opitz Parent Support Group

Bohring-Opitz Syndrome/ASXL1

Community

The various goals of this website are to:

  • To connect families of children with Bohring-Opitz Syndrome
  • Provide and exchange numerous types of information among parents and caregivers,
  • To increase international awareness of Bohring-Opitz Syndrome,
  • To extend knowledge and informational resources to medical professionals who treat children with Bohring-Opitz, and
  • To encourage and promote continued research in order to improve the quality of life of our children.

Latest Posts

Elaney’s Story

Elaney’s Story with Bohring-Opitz Syndrome, written by her mother when she first became acquainted with the BOS Support group 10 years ago. “Elaney’s life has been a long and winding road with many ups and downs, twists and turns.” A number of things have changed in that time, but with a view of today there is one that remains: “Now age 19, she is much the same as she has always been; forever our baby girl.”
Thank you, Gina, for sharing your story of Elaney with us today!

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10 Years BOS Timeline

Celebrate 10-year anniversary of the Bohring-Opitz Syndrome Support group with us.

Happy Anniversary!

#10YearsBOS #BOS #BOSAware #ASXL1 #BohringOpitz #RareDisease #BOSFamily #bossupportgroup

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RARE Publications

Today is Rare Disease Day. Today is 28 February, Rare Disease Day!  The rarest day of the year, dedicated to raising awareness for people living with a rare disease.  Bohring-Opitz Syndrome (BOS) is a ultra-rare condition with only a few handful of cases worldwide in the beginning. Prior to 2011 the diagnosis relied mainly on recognizing the distinguishable…

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ASXL Registry Newsletter

From the ASXL Registry Team: Dear Registry Families, We are pleased to share the second issue of our ASXL Registry newsletter.  Additionally, we would like to take this time to assure you that the ASXL Registry is still operational during the pandemic and we would be happy to address any questions or concerns through our…

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