Photos from Rare Disease Day at Whitehead Institute

Many thanks to everyone who braved the weather last night to attend Rare Disease Day at Whitehead Institute. The event was a huge success: nearly 70 attendees stayed late into the evening to discuss rare disease research and advocacy efforts in the Boston area.

And a special thanks to our partnering organizations: the Caring for Carcinoid Foundation, the Crohn’s & Colitis Foundation of America, the National Tay-Sachs & Allied Diseases Association, the Progeria Research Foundation, and the Tuberous Sclerosis Alliance.

Photos from the evening are below.

Yaniv Erlich

Whitehead Institute Fellow Yaniv Erlich kicked off the evening's program with a presentation on genetic disease detection

David Sabatini

Whitehead Institute Member David Sabatini discussed the TOR pathway and the benefits of caloric restriction in reducing the incidence of a host of diseases

Harvey Lodish

Whitehead Institute Member Harvey Lodish discussed the challenges of developing drugs to treat rare diseases

Rare Disease Day Partner Organizations representatives

Following the scientific presentations, representatives from each of the five partnering foundations introduced themselves and their organization. From left to right: Audrey Gordon of the Progeria Research Foundation, Rob Harris of the Crohn’s & Colitis Foundation of America, Sue Kahn of the National Tay-Sachs & Allied Diseases Association, Khaled Barazi of the Tuberous Sclerosis Alliance, and Lauren Erb of the Caring for Carcinoid Foundation

Whitehead dining room on Rare Disease Day

Attendees then had the opportunity to meet with the various partnering organizations in small break-out groups

Khaled Barazi and David Sabatini

Khaled Barazi (right) of the Tuberous Sclerosis Alliance talks with his group while Whitehead Institute Member David Sabatini looks on

Rob Harris

Rob Harris, New England Regional Director of the Crohn's and Colitis Foundation (right)

Audrey Gordon

Audrey Gordon, President and Executive Director of the Progeria Research Foundation

Yaniv Erlich with Progeria Research Foundation group

Whitehead Fellow Yaniv Erlich (left) participates in a discussion with the Progeria Research Foundation group

Lauren Erb

Lauren Erb, Director of Research for the Caring for Carcinoid Foundation

Miguel Sena-Esteves leads a discussion

Miguel Sena-Esteves, a researcher for the National Tay-Sachs and Allied Diseases Association, talks with participants

Miguel Sena-Esteves and Sue Kahn

Sena-Esteves, with Sue Kahn, Executive Director of the National Tay-Sachs & Allied Diseases Association

Carol Greve-Philips and Scott Berns

Attendees stayed late in the evening to discuss rare disease research and advocacy efforts. Here, Carol Greve-Philips talks with Progeria Research Foundation Co-founder Dr. Scott Berns

Liliana Bachrach and Peter Westhaver

Whitehead Board of Associates Executive Committee member Liliana Bachrach with Peter Westhaver

Photo credit: Mark Bushy, Whitehead Institute