Hi to all, especially to mothers interested in starting Dent PAG. I have talked to people from National Institutes of Health and Sharon Terry from Genetic Alliance. She recommended getting on site www.wikiadvocacy.org and downloading information on how to start patient advocacy group. I have tried the site, it is a little confusing. You have to register and than search through the site on how to download information. She told me that once something is started you can join Community Forum – which can be found on their website - http://www.geneticalliance.org. I think this will be a process that requires time, but all these other patient advocates went through it. That's how you achieve results. Let me know how it goes and if you need any help. It would be good if mothers who initially expressed interest, reply on this forum and maybe work together? Best of luck! Lada

I will get on the website and try to get something started.

Would a patient advocacy group be referred to as a non profit?

I think so. I know there are 2 options. One is simpler but you cannot collect money. The other one is more complicated to start but allows you to raise money. People have suggested to me that you can start as a 1st, simpler version, and then expand. I think you should ask at the genetic alliance community forum (website in my initial post), where you can directly talk to people who started support groups. Lada

I have been to the wikiadvocacy website..it is hard to understand. I will try the genetic alliance community.

Thanks epjfk. Lada, I saw in Facebook that the American Society of Nephrology is looking into Dent disease. Good to hear! I mentioned to you last week that my mom is being offered a charity donation by her car dealer as part of the purchase. So for now, I think the the American Society of Nephrology is a good option.

We are all members of American Society of Nephrology, it's the biggest nephrology society in the US. You would get the most benefit if you started your own Dent advocacy group. Any luck with that? Lada