By: Leisa Greathouse

At the same time my son was diagnosed with Langerhans cell histiocytosis, I learned about orphan diseases. For those who may not know, orphan diseases do not receive, or receives very little, government funding for research. Research is the key to ridding our world of diseases and research takes funding.

When our son passed away, my husband and I put our energies into fundraising. The primary organization we support is the Histiocytosis Association of America (HAA), www.histio.org.  We came to know this organization as a legitimate, and perhaps the most active, association in this country funding a variety of research connected to rare histiocytic disorders, serving as a patient resource, and initiating numerous awareness and educational projects. When my husband and I donate, we are allowed to direct our contributions specifically for research.

“Funding research into all histiocytic disorders has been one of the Association’s central missions for 20 years. Since the formalization of its grant program in 1990, the Association has awarded a grand total of $4.4 million to 143 worthy scientific research projects. Historically, awards have ranged from $10,000 to $100,000. Each has been instrumental to the ongoing efforts in the areas of “basic” science and “clinical” science.”

When giving to a charity, one bestows a great amount of trust in an organization. How do you know that your money is well spent and spent on what you’ve intended? Some charities spend a larger percentage on paying their administrators than on their cause.

There are watchdog agencies that monitor the fundraising and spending habits of charities. When giving to a charity, it is a smart idea to conduct a little research and the Internet certainly makes that easy.

When money is freely given to an organization without suitable and transparent accountability, it is easier for fraud and deception to occur. Questionable charities with bad reputations make it more difficult for those of us who advocate for or spend time fundraising.

The Histiocytosis Association uses Charity Navigator, and has been awarded their Four-Star Charity Rating for the second year in a row. “Charity Navigator is the nation’s leading evaluator of charitable organizations. This honor is only bestowed upon charities that have demonstrated outstanding financial practices, based upon a review of their annual financial statements and other organizational documents. To learn more about Charity Navigator or the Association’s complete rating, visit the financial page of our website.”

You can help the rare disease community by making sure your fundraising and your personal contributions go to credible organizations achieving results. In addition to Charity Navigator, other groups that can help you “choose wisely” include your local Better Business Bureau, the American Institute of Philanthropy, and the Charities Review Council, just to name a few.

(Quoted statements are from the HAA’s eNewsletter, 2/2/11)

X