ICF Patient to Patient Program – Orlando, FL

Do you have Cystinuria or are a care-giver for someone who does? We invite you to attend a presentation at the Castle Hotel in Orlando, FL from 11:00 a.m. to 1:00 p.m. on Saturday, October 13, 2018. There will be a full buffet lunch and the event is free, but you must register by emailing icfpatientprogram@gmail.com. More details to come! Castle Hotel 8629 International Dr. Orlando, FL 32819 www.castlehotelorlando.com

T-CUPS Study Still Ongoing

T-CUPS (Tolvaptan use in Cystinuria and Urolithiasis: A Pilot Study) is looking for cystinuria patients age 12-25 to participate in a pilot study of a novel treatment to reduce stone recurrence. This FDA-approved short-term study is being conducted at Boston Children’s Hospital. It involved daily medication for eight days, two overnight stays in our research unit, and careful monitoring. Participants will be compensated. Please help us to advance the state-of-art for cystinuria treatment! If you or someone you know might be interested in learning more about this study, please contact the research office. Cathy Matero – Clinical Research Program Administrator … Read more

Seventh ICF Symposium

The seventh ICF Symposium will be held August 13, 2016 in Dallas, Texas at the Dallas Marriott Suites Medical/Market Center Hotel. This is a once in a lifetime chance to meet many other people with Cystinuria and to listen and learn from some of the world’s most renowned doctors dealing with Cystinuria. The Symposium is free to attend, but registration is required—please send an email to ICF President George D. Brown at the2nd1mb@gmail.com. Discounted rooms at the hotel are available until 7/22/2016 and can be booked for Friday and Saturday night directly through the hotel here. The Symposium will start with breakfast … Read more

Cystinuria.org website upgrade

Cystinuria.org is currently in the middle of a makeover for 2015, giving it an entirely new look.  More important, the new site is based on software that will facilitate the posting and maintenance of information and materials for learning.  Finally, a new hosting arrangement should ensure a more secure site than ever.  This is great news for the ICF’s online presence! Thank you for your patience with us during our site’s brief hiatus. The ICF is a volunteer-run organisation and updates can sometimes be slow.  However – we are working hard to deliver the latest generation of cystinuria.org as soon … Read more

Be Fashionable & Brave: Bravelets Jewelry Supports the ICF

As a parent of two young ladies with cystinuria, I never feel like I do enough. I know, I make appointments, talk to the doctor, sit in the ER, wait for them to come out of the OR, but it just didn’t seem like enough, especially when I think about how much money some of the other diseases have for research and awareness. They have television, newspaper and magazine ads – that is if they are a well-known disease. What about our small group, the one people don’t know about – how do we raise money? I started exploring fund … Read more

Education, Advocacy, Support, Highlight Sixth ICF Symposium

The International Cystinuria Foundation’s sixth symposium on Nov. 1, 2014 at New York University’s Langone Medical Center focused on a wide range of key issues, including new developments in patient care, research, medicine, patient advocacy, as well as the opportunity to speak face-to-face with others who share this journey in one way or another, as caregivers, patients, medical professionals, or pharmaceutical providers. For those unable to attend, the symposium was recorded and will soon be available for viewing. ICF President George Brown welcomed the diverse audience to the symposium, and shared the nonprofit organization’s gratitude for the generous support from … Read more

Cystone Study Concluded

Today the results of a four year effort to test the potential effect of an herbal supplement on cystine stone burden were published in the Journal of Urological Research. The study, led by Dr. Stephen Erickson at the Mayo Clinic, evaluated the use of Cystone®, an herbal treatment that had been implicated in a case study in the reduction of stone formation. The results were reported to be negative, with neither a change in urinary composition nor a decrease in stone burden observed in patients receiving Cystone®. While the authors state that “A longer term study with more patients would … Read more

The Rare Kidney Stone Consortium Announces the Cystinuria Registry

Your participation is essential to the improved understanding of this lifelong disease and in the development of new treatment options. The Rare Kidney Stone Consortium has opened enrollment for the Cystinuria Registry at New York University. In this registry, patients with cystinuria will be enrolled and information collected about their condition annually. The collected data in this registry will help provide a better understanding of the condition. The goal of this registry is to collect data about this rare disease, that may help to develop better treatment protocols in the future. The privacy and confidentiality of all information collected in … Read more