The following patient advocacy groups may prove to be of support to you as you are trying to educate yourself about current experimental therapies and  related indications.

Orphanet
The portal for rare diseases and orphan drugs. A database of information on rare diseases and orphan drugs for the public. Aims to contribute to the improvement of diagnosis, care and treatment of patients with rare diseases.
Includes a Professional Encyclopaedia, which is expert-authored and peer-reviewed, a Patient Encyclopaedia and a Directory of expert Services. Directory includes information on relevant clinics, clinical laboratories, research activities and patient organisations.

View orphanet listing on Gene Signal orphan drugs

Eurodis,  Rare Disease Patient Society
An alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.

The Eyecare Trust
Registered charity that exists to raise awareness of all aspects of ocular health, the importance of regular eye care and good eye wear. Provide accurate, unbiased eye care information to the public. 

KÓROS
“Associazione per Promuovere la Ricerca e la Prevenzione delle Malattie Oculari Infantili o.n.l.u.s.” -  Italian association devoted to promoting the  research and prevention of pediatric opthalmic diseases.

Keratos
European Association on Ocular Surfaces Diseases and Lachrymal Dysfunctions.
Non-profit organization aiming to increase the exchange of information on therapeutic trials and research in the area of ocular surface disease, with focus on France, Belgium, Portugal, Norway.

Keratokone
Supporting people afftected by Keratokonus (a corneal degenerative disorder) in France and in the French speaking world.