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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).
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