I am very happy to say that a group of parents, physicians and researchers met in London Dec 15. at the Rare Stone Consortium Meeting and had a fantastic experience! I believe this is the largest group of people interested in Dent disease who had ever met and it was very interesting, instructive and emotional. I was so impressed and touched that all RareShare UK parents came! It was wonderful to meet you in person and, as Dr. Unwin said, I too agree that this is just a beginning. We work in spurts, trying to find time in our schedules, but we ARE moving forward. Thank you, again, UK parents. Your dedication, drive and spirit was inspiring. It was a special treat for me to be back in England, the country I fell in love with as a teenager. I hope we can replicate something similar in the US. Warmest regards, Lada

It was really good for us to meet all of you. My son was only very recently diagnosed, so it made a huge difference for us to be able to speak to people who knew and understood what Dent's is. I am very excited about my son's future at the moment and I will keep you updated on any changes to his treatments as they happen. Thank you again Vicky

Thanks Vicky! Regarding joining the registry, I have forwarded your info to Barb Seide, our research coordinator and asked her to contact you. If you don't hear from her in a couple of days, please email her at seide.barbara@mayo.edu. John and I have talked to her about you already. Let me know if you have any problems, this should work. Lada