About us

The Foundation for IgA Nephropathy

About us

Who we are

The Foundation for IgA Nephropathy is a non-profit organization incorporated in the United States and headquartered in Palo Alto, California. The website itself is operated from Ottawa, Canada.

Our postal mailing address is:

Foundation for IgA Nephropathy

P.O. Box 61221

Palo Alto, CA 94306-1221

U.S.A.

Until the advent of the World Wide Web, there was virtually no information at all available to IgAN patients about this disease. In fact, until the mid-1990's, you would have been hard-pressed to find a definition for the term "IgA nephropathy" itself outside of a large medical school library. Most doctors and nurses you would have encountered would have had only a passing acquaintance with the term if at all, and your own nephrologist might have simply said you had "a kind of chronic glomerulonephritis".

In mid-2005, some associates and I decided to incorporate our existing email support group as a non-profit foundation. And so the IgA Nephropathy Support Group which I started in the year 2000 became The Foundation for IgA Nephropathy. Much of the actual work in getting this done can be credited to my colleagues and fellow board members Cy Ashley Webb and Laura Weber, and to the people who provided the donations needed to cover the startup costs.

We provide this website and an active moderated Support Group on Yahoo Groups which serves a world-wide subscriber base.

The Foundation, the website and the Support Group are peer-operated by kidney patients for kidney patients.

As a non-profit, our goal is to provide balanced information and support in a totally non-commercial environment. The Foundation derives zero income from the website nor from any of its current activities except from donations. As an incorporated non-profit organization, we accept donations on our donations page to help defray the costs of running the website and the foundation, and we do have hopes of moving on to bigger and better things for the IgAN community as funds permit.

The other board members and I hope to hear from you on our support group or via our contact form.

Pierre Lachaîne

President & CEO

Foundation for IgA Nephropathy

Ottawa, Canada

December, 2007

Mission Statement

Our mission. The Foundation is established to educate patients, family members and the public about renal disease and related disorders, provide social and emotional support for renal patients and persons associated therewith, and to further the understanding of renal disease and public policy related thereto.

Our philosophy. We promote objective sharing of knowledge and experience of IgAN among patients in the context of conventional medical treatment. Our hope is to supplement the information you may get from your nephrologist or internist, and to help calm some of the fears and anxieties you may experience when diagnosed with this disease. We want to help you not only understand your disease, but also get you to the acceptance stage as smoothly as possible so that you may be able to put things in perspective and to go on with your lives.

New treatments. While we certainly encourage and are keenly interested in research into new treatments, we also try to recognize the difference between those that have proven value, those that are currently investigational, prospective or experimental, and those that have no proven value. While we are aware of the limitations of clinical trials, we believe that properly-conducted, peer-reviewed clinical trials remain the best tool we have of determining what is of proven benefit in the treatment of IgAN.

Alternative treatments. Since there are no studies to support treatments from the fields of homeopathy, naturopathy and folkloric herbal medicine, and much disinformation and commercial promotion, we do not provide information on these, nor do we allow promotion of such treatments by members within our support groups. We strongly advise caution with these, as some may prove to be harmful. However, if you do want to research such treatments on your own, there are many other websites on the Internet available to you.

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