- It's difficult to find reliable information
- It's difficult to find other people who have it
- It can also be difficult to find doctors who know much about it
Each rare disease group (RDG) will need lists of patients, ways to contact them, and ways to keep up with how they're doing. Most of this info is already in Renal PatientView, so if you want to join, the first thing you'll be asked to do is to sign up to sharing your info with the Disease Group.
This system is being called RADAR (Renal Rare Disease Registry). Your name and where you live won't be part of that, but they will be kept so that the group's organisers can keep you up to date with info and research, and get you together online or in person.
A lot of work has been going on behind the scenes to make this technically possible, and to make it as easy as possible for staff to get info into the system. We hope that the first new group, the Alport group, will launch very soon, closely followed by the others.
www.rarerenal.org has more about the Rare Kidney Diseases initiative
The BKPA and Kidney Research UK have supported the development of 'RADAR' and its integration with RPV, to keep the register for each disease.
The image shows rare kidneys and common ones.