BOS Foundation Becomes NORD’s Newest Member
It is with great pleasure that we announce the acceptance of the Bohring-Opitz Syndrome Foundation into the National Organization of Rare Disorders (NORD). This shows the progress we have made in developing our Foundation into one that meets the criteria for becoming a member of NORD. We have successfully shown that we have a patient-centered focus, assisting families affected by Bohring-Opitz Syndrome diagnoses. Last year, we quickly achieved 501c3 tax-exempt status, thanks to the generous donors supporting the Foundation. We have also established a medical advisory board to help families understand the disorder and forge a link between families, the foundation, and the medical community.
Membership in NORD will give us many opportunities and advantages that will add value to the Bohring-Opitz Foundation. We will have expanded peer networking and guidance from a larger organization. The Foundation will also have access to breaking news relative to rare disorders. Additional promotion of the Bohring-Opitz Syndrome Foundation and Bohring-Opitz Syndrome will advance the awareness of the disorder. Our board and volunteers will have more opportunities for education and growing their knowledge in order to best help Bohring-Opitz Syndrome Foundation members. More information about NORD can be found at www.rarediseases.org.