offering our support in response for their input; information sharing, experience of living with r(20), treatment options, fundraising and more. We ask that all families, individuals and professionals that wish to engage with us become members, in order that they may jointly contribute to our cause, by virtue of time, money or information (no matter how large or small).
We rely on our members and supporters to help us move forward in our quest. It also ensures we do not lose contact with you, should your contact details change in the future. If you haven’t already done so, please take a few moments to sign-up using the form on the right.
As members you will be invited to vote at our AGM (held in March/April each year) and have your say in the charitable activities in which we engage. We may contact members from time to time with information regarding r(20) and/or our charity, which we think will be of interest to you. We take your privacy seriously and will not pass on your personal details to any other person or organisation without prior consent.
Membership is FREE, open to all those aged 18 or over and there is no obligation.
As a patient support group we are putting r(20) on the map – quite literally!
We have started plotting known cases of r(20) around the world onto a Google map to highlight the number of cases and their location.
We have 2 versions of the map:
• PUBLIC – an anonymous map of known cases, for sharing with anyone interested including Health Professionals
• PRIVATE – shared only amongst consenting members, contact details of families who with to stay in contact with others around them
For inclusion on the PUBLIC MAP
If you would like to be added to the Public map please provide the following details:
Contact name (for our reference will not be published – you will be identified as a number on the map)
Gender of patient
Location (please include all of the following):
For inclusion on the PRIVATE MAP
If you wish, the following details can be added to the Private map so that it may be shared with other families which will make it easy to connect with other locally to you: (optional – you may include any/all of the details below)
If you have any questions please contact us