Photos from 2013 Rare Disease Forum at Whitehead Institute

In recognition of International Rare Disease Day, Whitehead Institute hosted its 2nd annual Rare Disease Forum on the evening of February 28th. More than 100 people turned out to learn about Whitehead’s latest rare disease research and to hear from rare disease advocacy organizations from across New England. Check out photos from the event below.

The Rare Disease Forum is held each February at the Institute in Cambridge. If you missed this year’s event, but would like to learn more about other Whitehead events including next year’s Rare Disease Forum, we encourage you to contact Lauren Gilbert at (617) 258-5489 or for additional information.

Whitehead Institute Member and MIT Professor of Biology Hazel Sive opens the evening program, discussing the vital role that basic biological research plays in developing treatments for rare and devastating maladies

Hazel presents her lab’s research. She is currently using the uniquely transparent zebrafish—which enables direct observation of the developing brain—as a tool for identifying genes that may be associated with autism and other mental health disorders.

Whitehead Fellow David Pincus discusses how our cells adapt to environmental changes, such as changes in temperature or pH. The cellular pathways that respond to these changes can be hijacked by various cancers and pathogens—understanding their precise function will be critical to developing targeted therapies for these diseases.

Whitehead Fellow Sebastian Lourido presents his research on the molecular basis of parasitic diseases. Sebastian and his lab are currently studying the parasite Toxoplasma gondii, which latently infects an estimated 25% of the world’s population and can cause harmful infections in immunocompromised individuals and pregnant women.

Following the scientific presentations, representatives from various rare disease advocacy organizations discussed their efforts to promote rare disease research. Here, Arpy Saunders of the Association for Frontotemporal Degeneration.

The Caring for Carcincoid Foundation’s Ron Hollander discusses his organization’s advocacy work

Lauren Erb, also from the Caring for Carcinoid Foundation

Carmen Camacho (speaking), from the Hermansky-Pudlak Syndrome Network

Discussion continued over coffee and desserts. Here, Cindy Scurlock of the Turner Syndrome Society talks with Rare Disease Forum attendees

Photo credit: John Correa