News Briefs

National Organization for Rare Disorders Honored for Effective Use of Donated Funds

Danbury, CT-----For the seventh consecutive year, the National Organization for Rare Disorders (NORD) has earned the top (4-Star) rating from Charity Navigator, a leading independent evaluator of charities.  The 4-Star or "Exceptional" rating honors charities that consistently exceed standards and outperform most others in their category.

"We are gratified by this rating because maintaining our focus on patients and families is extremely important to us," said NORD President and CEO Peter L. Saltonstall.  "We want donors to know that contributions to NORD will be spent in the best possible way to provide needed services for a medically underserved population - the nearly 30 million Americans with rare diseases."

According to the Charity Navigator evaluation, almost 95 cents of every dollar donated to NORD last year went to programs and services for patients and families.  Only 3.7 percent was spent on administrative costs and just 1.2 percent on fund-raising.

Since 1983, NORD has served as the primary representative of the one in 10 Americans with rare diseases. It provides advocacy, information and referrals, networking, mentoring and other services to help patients, their families, and rare disease patient organizations.

NORD also provides research grants to encourage the study of rare diseases and administers patient assistance programs to help patients obtain certain medications they could not otherwise afford.  Other services include encouraging and facilitating the development of new treatments for rare diseases.

A disease is considered rare in the U.S. if it affects fewer than 200,000 people. There are nearly 7,000 such diseases affecting nearly 30 million Americans.

In describing its evaluation process, Charity Navigator notes that it "works to guide intelligent giving. Our goal is to help people give to charity with confidence. At the same time, we hope to help charities by shining a light on truly effective organizations.  Givers can be confident that in supporting those organizations rated highly by Charity Navigator, they will be supporting organizations that are fiscally responsible and financially healthy."

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The Progeria Research Foundation (PRF)
The PRF will hold its 6th International Workshop on Progeria, "From Bench to Bedside in a Decade" April 11-13, 2010 in Boston, MA. The meeting will promote scientific discussions in formal and informal settings with a focus on bringing basic and clinical science together to promote collaboration and progress in progeria research. NIH Director Francis S. Collins, MD, PhD will be the Plenary Speaker. Other highlights include a progeria family panel and presentation of the first-ever progeria clinical treatment trial results.

Registration and information.

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, a Founder of Neurofibromatosis, Inc. (http://www.nfinc.org/);
• Emil Kakkis, MD, PhD, President of the Kakkis EveryLife Foundation (http://www.curetheprocess.org/)
• Marybeth Krummenacker, a Founding Board Member of the Cystinosis Research Network (http://www.cystinosis.org/)
• Mary Sprague, Executive Director of Dystrophic Epidermolysis Bullosa Research (DeBRA) (http://www.debra.org/);
• Charlene Waldman, Executive Director of the Paget’s Disease Foundation (http://www.paget.org/); and
• Wendy White, Founder and President of Siren Interactive Corporation (www.sireninteractive.com).