ICA Österreich e.V. (Austria)
Elke Hufnagl

Elke Hufnagl is the Chairperson and Founder of ICA Österreich, a registered Austrian nonprofit since September 2000. Elke, an IC sufferer, turned to ICA Germany leaders to help with the formation of ICA Österreich. The collaboration between Germany and Austria led to first-contacts about IC with urologists in Austria.

The aim of ICA Österreich is early diagnosis, as well as obtaining the best treatment possible according to the latest scientific knowledge. ICA Österreich maintains seven patient support groups throughout Austria, and also holds an annual meeting for all Austrian IC patients with well known speakers presenting IC information.

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ICA-Deutschland e. V. (Germany)
Barbara Mündner-Hensen
www.ica-ev.de

Barbara Mündner-Hensen, ICA – Deutschland President and Founder, was suffering from IC in the early 1990s when she traveled to USA to obtain a diagnosis and begin treatments. Inspired by the information and help that she received from the ICA – USA during this time, she decided to found ICA – Deutschland. She established the nonprofit ICA – Deutschland in 1993. ICA – Deutschland is distinguished as the first-ever IC association in Europe.

Barbara has organized many national and international IC meetings in Germany, and has spoken on IC at many international and national meetings, including conferences in Austria, Hungary, Italy, Japan and Germany.

ICA-Deutschland is the publisher of the book and CD-Rom, Interstitial Cystitis – State of the Art, and many other IC educational brochures. The Medical Advisory Board of ICA-Deutschland is very active in IC education and research, and several European IC research studies are initiated and supported by ICA-Deutschland.

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ICA-Deutschland e. V. (Germany)
Jürgen Hensen
www.ica-ev.de

Jürgen Hensen, co-founder of ICA – Deutschland, has been a financial consultant by trade since 1979. His knowledge about financial and commercial business predestined him to manage the office of ICA-Deutschland. He is co-founder and manager of ICA-Deutschland and helps Barbara to manage the Association. Very active within the IC patient community in Germany, Jürgen is in continual contact with nearly all ICA-Deutschland members. His extensive knowledge about IC helped him to co-edit the ICA-Deutschland book, Interstitial Cystitis – State of the Art, and many IC brochures. Jürgen has organized many national and international IC meetings in Germany.

Associazione Italiana Cistite Interstiziale AICI (Italy)
Loredana Nasta

Loredana Nasta founded the nonprofit Associazione Italiana Cistite Interstiziale (AICI) in Rome in 1995, along with her best friend, also an IC sufferer, and several other IC patients. She became chairperson of the Association in 1999, and began working with Italian rare diseases policy to help to get recognition for IC, and to encourage IC research.

Also in 1999, Loredana helped to found The Italian Rare Diseases Federation (IRDF), and is the IRDF President. She is also a member of the Rare Diseases Committee of the Italian Ministry of Health. Her work with these committees and organizations has helped to raise awareness of IC in Italy, to obtain coverage of medical costs of IC treatments, and to have IC officially recognized as a disability.

In 2001, Ms. Nasta promoted a new law in Italy on rare diseases. The law is designed to increase research and improve all rare disease sufferers’ quality of life.

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ICA – United States
Vicki Ratner, MD
www.ichelp.org

Vicki Ratner, MD, an orthopedic surgeon and Interstitial Cystitis Association Founder and President, established the ICA as a US registered nonprofit organization in 1984, after developing interstitial cystitis herself during medical school.

The ICA has funded over $1.5 million in IC research grants in the past two decades, and was instrumental in establishing a US Social Security Administration Disability Ruling for IC. The ICA’s Medical Advisory Board consists of internationally known IC experts.

The ICA also works closely with US Congress and the National Institutes of Health (NIH) to ensure continued funding of IC research at the Federal level. They have secured nearly $100 million in Federal funding, to date, and these funds have been distributed by the NIH directly to IC researchers over the past fifteen years.

Dr. Ratner has been appointed to the NIH Advisory Council for a four-year term, and also serves on the NIH IC Clinical Trials Group. She has received numerous awards and honors for her work. In her fight for IC recognition, she has made appearances on ABC’s Good Morning America and CNN, and is featured in such publications as US News and World Report, The New York Times, and The Washington Post.