Uploaded July 2015 | Updated September 2026, 2 weeks ago
The Community Council meeting begins at mark 5:08.
The Community Council has been created to educate and inform the EB community with reliable and current information from trusted specialists and researchers in the field. It has representation of various viewpoints and values from within the EB community. The Community Council is open to all members of the EB community (individuals with EB, families, advocates, doctors, supporters, etc). 3-4 times a year, the Community Council will host a 30-minute webinar on a specific topic related to EB. Topics could include current research, advocacy, genetics, and emotional health. Each webinar will conclude with a question/answer period.
Our July Community Council meeting was focused on Public Policy Advocacy. Two distinguished co-hosts shared their expertise:
– Eleanor Dehoney, Vice President of Policy and Advocacy at Research!America and EB Research Partnership Board Member
– Michele M. Oshman, Director, Federal Alliance Development, Corporate Affairs, Eli Lilly and Company.
About EB Research Partnership
ebresearch.org
Founded in 2010 by a group of dedicated parents and Jill and Eddie Vedder of Pearl Jam, EB Research Partnership is the largest 501c3 nonprofit funding research to find a cure for Epidermolysis Bullosa (EB). EB is a group of devastating and life-threatening genetic skin disorders that affect children from birth.
The Community Council meeting begins at mark 5:08.
The Community Council has been created to educate and inform the EB community with reliable and current information from trusted specialists and researchers in the field. It has representation of various viewpoints and values from within the EB community. The Community Council is open to all members of the EB community (individuals with EB, families, advocates, doctors, supporters, etc). 3-4 times a year, the Community Council will host a 30-minute webinar on a specific topic related to EB. Topics could include current research, advocacy, genetics, and emotional health. Each webinar will conclude with a question/answer period.
Our July Community Council meeting was focused on Public Policy Advocacy. Two distinguished co-hosts shared their expertise:
– Eleanor Dehoney, Vice President of Policy and Advocacy at Research!America and EB Research Partnership Board Member
– Michele M. Oshman, Director, Federal Alliance Development, Corporate Affairs, Eli Lilly and Company.
About EB Research Partnership
ebresearch.org
Founded in 2010 by a group of dedicated parents and Jill and Eddie Vedder of Pearl Jam, EB Research Partnership is the largest 501c3 nonprofit funding research to find a cure for Epidermolysis Bullosa (EB). EB is a group of devastating and life-threatening genetic skin disorders that affect children from birth.
