As a member of the Retina International sub – committee responsible for membership I would like to congratulate you and your group on the progress that you have already made and wish you good luck for your future endeavors.
I am always available for any advice or assistance that you may require. We started our organization in a very modest way 27 years ago and we understand the problems that a new organization encounters.
AsMacular I have not seen your founding documents yet I am not sure what your criteria is for membership
If you have not yet already done so you may wish to consider extending your membership also to patients affected by Macular degeneration. As we have made progress in understanding the conditions at a genetic level we have come to realize that the Macular Degeneration and RP have many areas of commonality.
For example some mutations in the ABCA4 gene leads to Stargardt Disease, a juvenile Macular degeneration, while other mutations in the same gene cause RP and yet further different mutations in another part of the gene may cause Age Related Macular Degeneration.
By extending your membership to other categories of Retinal Degeneration you will also widen your membership base and avoid the possibility of a second Macular organization starting in opposition in your country as has happened in Britain and Holland.
Should you wish to download any information from our website please feel free to do so. I attach a copy of our latest newsletter and I am sure that Christina will add you to the RI mailing list.