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LONG ISLAND CHAPTER- Providing Hope and Support
With the help of PKD Foundation Chapters in cities across the country and beyond, the PKD Foundation provides a forum for patients who want to join in the fight to raise find a treatment and cure for PKD.
Chapter Coordinator: Gillian Kolodny LongIslandChapter@pkdcure.org
If you would like to contact the Long Island Chapter by phone, please call 1-800-PKD-CURE.
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We Have A NEW Name.
For some years now, we've been known as the Greater New York Chapter. While we cover a "great" area, the name does not easily identify where our members are from. We've received calls from folks that were not aware there even is a chapter here on Long Island. Since helping others find support and educating the community about PKD is so important, we've decided that our name needs to better represent WHO we are.
Did you know our chapter covers all of Suffolk County, Nassau County and Queens? We are now known as the Long Island Chapter. Please bear with us as we change our name. Our e-mail address is now longislandchapter@pkdcure.org. We invite you to come meet us and join the fun! Please e-mail us if you wish to be included on our local chapter e-mail list aned we'll see to it that you receive all the necessary details and meeting minutes so you are best informed. In the event that you would like to be removed from future PKD Foundation e-mails or mailings, please let us know and we'll make that change.
Connect with other PKD patients and families in your area.
Come join us! At our meetings, you will find a great group of caring, supportive people who all have been touched by PKD in some way and who are willing to share their knowledge of the disease. We also host guest speakers and leaders in the field of PKD that help us continue our ongoing educational awareness program. In order to best meet the needs of our members who hail from Suffolk, Nassau and Queens, we alternate where our meetings are held between an eastern and western location. Please reference the schedule below:
Our meetings take place on the third Thursday of every month at 7:00 p.m.
June 18, 2008 - Waldbaum's Dialysis Center
July 16, 2009 - Sachem Public Library
August 20, 2009 Waldbaum's Public Library
September 17, 2009 Sachem Public Library
October 15, 2009 - Waldbaum's Public Library
November 19, 2009 - Sachem Public Library
For more information on our monthy meetings, please contact us at longislandchapter@pkdcure.org.
Did you know?
We produce a weekly television program that you can see on Cablevision's Public Access channel. Tune in and check it out!
Learn More About PKD.
Click here to view our Summer Newsletter.
Clinical Trials
Clinical Trials need participants. We have quite a few members currently involved in clinical studies to help understand treatments for PKD. The Temp 3/4 (Tolvaptan) Study is still recruiting patients for participation. If you are interested, find out more about the qualifications and details in our area by using the resources below:
Tempo 3/4 Study:
U.S. Information Line: 
866-712-5837
Informational Webinars
Please check back for updates on our upcoming FREE educational webinar!
Join in a variety of fun events.
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National Convention on PKD - Summer 2009
Join us this summer in Chicago, IL on June 26 - 28, at the Double Tree Hotel Chicago - Oak Brook.
“I quickly realized that these strangers all understood and cared about the disease that has harmed my family for generations. That realization led to the joy of making new friends and realizing that my fate is not sealed. Please come and join me at this year’s National Convention on PKD, and see that you are also not alone in your battle with PKD.”
- 2008 National Convention on PKD Attendee
Click here for more information.
Click here to register.
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Check back often for infomation on our chapter meetings and events in 2009.
Make a Difference in the lives of 12.5 million people.
There are jobs for everyone, big and small. Just contact us at LongIslandChapter@pkdcure.org to find out how you can make a difference in the lives of 12.5 million people!