Wendy White appointed to National Organization of Rare Disorder (NORD) board of directors

Six New Members Elected to NORD Board of Directors

Danbury, CT (Sept. 3, 2009) - Six individuals with expertise in areas related to rare disease awareness and advocacy have been elected to the Board of Directors of the National Organization for Rare Disorders (NORD). NORD represents the nearly one in 10 Americans with rare diseases.

“We are thrilled that these individuals have accepted the call to help guide NORD through this important period in its history,” said NORD President and CEO Peter L. Saltonstall. “NORD is poised for growth at this time. The patients and families we serve need strong leadership at the national level, and the role of our Board of Directors is critically important. We are grateful to these individuals for sharing their expertise.”

The new board members are:

Brenda Duffy is the mother of two children affected by neurofibromatosis, a genetic disorder that causes tumors to grow on nerves and may also affect the skin and bones. Ms. Duffy served on the board of Neurofibromatosis, Inc., for 20 years and was president of the organization from 1998 to 2005. Over the years, in addition to her advocacy for patients and families affected by neurofibromatosis, she has participated as a consumer representative in National Institutes of Health (NIH) programs, a member of the Integration Panel and a consumer reviewer and presenter for the Neurofibromatosis Research Program for the U.S. Army Medical Research and Materiel Command (USAMRMC), and has testified before Congressional hearings and panels. She is a special education teacher, working with first grade students who have multiple disabilities in an inclusion classroom.

Emil Kakkis, MD, PhD, who is board-certified in pediatrics and medical genetics, was the lead investigator in the development several years ago of the first treatment for a rare metabolic disease known as mucopolysaccharidosis (MPS) type I. Dr. Kakkis later guided the development of new treatments for two other rare metabolic diseases (MPS VI and phenylketonuria). For 10 years, he was Chief Medical Office of BioMarin, a biotechnology company based in California. Now Dr. Kakkis has founded the Kakkis EveryLife Foundation to accelerate the process of orphan drug development and approval.

Marybeth Krummenacker is the immediate Past VP of Education and Awareness for the Cystinosis Research Network, and has held numerous positions over the years in that nonprofit organization. Cystinosis is a rare disease affecting about 500 people in the U.S. and 2,000 worldwide that causes tissue and organ damage throughout the body. Ms. Krummenacker’s daughter was diagnosed with cystinosis more than 20 years ago, and since then Ms. Krummenacker has been active on the national level in education and advocacy efforts. She is particularly interested in activities to educate families on topics related to living with rare diseases and to increase understanding of rare diseases among medical professionals.

Mary Sprague is the Executive Director of DebRA of America, a national nonprofit organization offering patient support, advocacy, and research for people affected by a rare genetic disease, epidermolysis bullosa (EB). This disease causes the skin to be fragile and easily injured, leading to the formation of painful blisters. Ms. Sprague previously held executive positions in the human resources and related industries, serving as Director of Managed Work Services of New York and Director of Flik International (Division of Compass Group NA).

Charlene Waldman has been the Executive Director of the Paget Foundation for Paget’s Disease of Bone & Related Disorders since 1986. This national voluntary health agency focuses on Paget’s disease, a condition that may result in bones becoming fragile and misshapen, and related bone diseases. She has authored, co-authored, edited, and reviewed more than 100 publications for patients and health professionals on Paget’s disease of bone, primary hyperparathyroidism, fibrous dysplasia, osteopetrosis, and the complications of certain cancers of the skeleton. Ms. Waldman has planned and organized more than 117 conferences and symposia for patients and health professionals.

Wendy White is the Founder and President of Siren Interactive Corporation, which is dedicated to helping biopharmaceutical clients use the power of the Internet to establish trust relationships with patients, caregivers, and healthcare professionals through education, support and service. Ms. White authors a popular blog on marketing therapies for rare diseases and is a frequent public speaker on the topic. As the mother of a child with a rare disorder, she is intensely interested in patient empowerment and the role of the Internet in providing self-education and support. She led global Internet Initiatives and eStrategy for the Healthcare Businesswomen’s Association (HBA) and is currently President of the HBA Chicago Chapter. She received the HBA President’s Award for 2008. NORD, a non-profit organization established in 1983, is dedicated to helping people with rare diseases and assisting the organizations that represent them. Through programs of education, advocacy, research and patient assistance, NORD serves the nearly 30 million Americans who have rare diseases. A rare disease is one that affects fewer than 200,000 Americans.

NORD is also the national sponsor of Rare Disease Day, a global initiative launched two years ago to raise awareness of rare diseases as a public health concern. This special day is observed on the last day of February. To learn about plans for Rare Disease Day 2010, visit NORD’s website (www.rarediseases.org) and sign up for the NORD e-News.

View list of NORD Board of Directors here.