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 join our mailing list using the SIGN UP button on our home page.
As members you will be invited to vote at our AGM (held once per 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. You may unsubscribe at any time.
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 (see Figure 1 below)
• PRIVATE – shared only among consenting members, contact details of families who with to stay in contact with others around them
If you wish you may also send us a recent photo of the patient (for inclusion on the PRIVATE map only) to firstname.lastname@example.org