Dear ladies and gentlemen, we are pleased to pass following news:
Retina International was approached in October by patient representatives affected by Choroideremia, who have asked if RI would consider forming a patient network. With this in mind, we have formed the Retina International Choroideremia Special Interest Group (SIG) (RI-CHM). This will be made up of volunteer patient experts who will work to connect satellite groups and organisations, as well as individuals and families affected by Choroideremia.
The group will also work to identify and connect patients affected by Choroideremia to appropriate research institutions and to established expert centres. The aim of this will be to incorporate them into the existing Choroideremia Community and provide capacity building to those who wish to engage in advocacy for their conditions. The SIG will work towards better quality of life for people living with Choroideremia through the promotion of research and equitable access to emerging therapies.
- To connect satellite groups and organisations as well as individuals and families affected by Choroideremia internationally.
- To identify and connect patients affected by Choroideremia to appropriate research institutions and to established expert centres with a view to incorporating them into the existing Choroideremia and Retina Research Community.
- To identify global ambassadors and advocates for Choroideremia in the Retina community at large.
The SIG will be chaired by Michael Längsfeld of PRO RETINA Germany and a member of the board of Directors of the Choroideremia Research Foundation. The SIG is now seeking volunteers to join and commence work on strategic planning. If you or a member of your organisation is interested in participating in this, or would like more information, please contact firstname.lastname@example.org or at our homepage under http://www.retina-international.org/ri-chm/