Bohring-Opitz Syndrome Foundation, Inc.
"The Best Life for All Families Living with BOS"


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BOS Foundation Board Member Attends Global Genes RARE Patient Advocacy Summit


Tony Nguyen, BOS Foundation Board Member, attended the 2017 RARE Patient Advocacy Summit organized by Global Genes September 14-15 in Irvine, California. He joined other rare advocates from all over to globe to Connect, Collaborate, and Activate.

The educational conference created an opportunity for members of the rare disease community to share best practices, network, and encourage future collaborations. Attendees shared their experience, knowledge, and expertise as conference presenters and/or participants.

There were 40 states represented at the conference and over 170 rare diseases were represented with BOS among them. The majority of participants were rare disease advocates including patients, caregivers, and nonprofit professionals. About a quarter of attendees were corporate and industry representatives.

The two-day event consisted of multiple track workshop sessions with a variety of topics related to rare disease. These were topics that ranged from legislative, patient and/or family and caregiver, and medical/research topics in the rare disease community to name just a few.

Tony, the Foundation’s fundraising chair, made some valuable connections and learned a lot on many topics he shared with the Foundation Board.

Global Genes also hosted their RARE Champion of Hope Awards which provides an opportunity to recognize individuals who are true agents of change and innovation. Award nominees are honored for their commitment and dedication to the development of treatments, therapeutics, and levels of care that have improved the lives of patients and families who have been touched by rare disease.

Next year’s summit will also be held in Irvine, California on Oct. 4-5, 2018. To learn more about Global Genes and their events for patient/caregivers, click here.

To learn more about fundraising opportunities you can contact For volunteer opportunities, contact


Michelle DotyComment