Rare Disease Report

NORD Breakthrough Summit 2015 | Page 2

In Huntersville, North Carolina, there is a cluster of patients with uveal melanoma that may hold the key to finding out the cause for this cancer.
Richard Peters, MD, PhD, head of the global rare disease business unit at Genzyme talks about some of the programs Genzyme is involved with to diagnose patients with rare diseases more quickly.
Sharon Lagas, president of the Alport Syndrome Foundation talks about the history of the foundation, resources for Alport syndrome patients and upcoming Kidney Week plans
Moureen Wenik of the Foundation for Ichthyosis and Related Skin Types (FIRST) talks about the disease, treatment options and resources that the foundation offers to physicians and patients.
Bert Bruce of Pfizer talks about a session he chaired at the NORD Breakthrough Summit on how to get your message to your target audience.
Zsa Zsa Stallings of Cure in Sight talks about their OMG (Ocular Melanoma Getaway) program that provides free vacations to families dealing with ocular melanoma.
Barbara Conley MD, associate director of the Cancer Diagnosis Program at the National Cancer Institute talks about the NCI-MATCH sequencing and exceptional response programs at the 2015 NORD Breakthrough Summit.
Sharon Lagas, president of the Alport Syndrome Foundation talks about the disease and possible treatments at the 2015 NORD Breakthrough Summit.
Susan Sherman, executive director of the LAM foundation describes the rare disease and the current treatment options for this devastating disease.
Janet Woodcock, MD, Director of CDER/FDA talks about the future of drug development, including the use of disease models.
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