Almost all those who are suffering from rare and incurable diseasefeel the need to be in touch with others and find information on research, treatments, therapies and technologies, but in many cases the disease is so rare that it is not easy to meet personally someone with the same physical, psychological and social, conditions to exchange point of views, suggestions and experiences.
But there is the internet, where you now find all the information and updates, and if till some years ago Forums were the virtual places where people with common interests and needs coule meet, now the role has been almost completely replaced by Facebook.
While some skeptical do not want to use it because frightened by the possibility of being followed, traced, controlled, there are several schools of thought and I personally think that now there is no way out and Facebook is not the only to play the part of Big Brother.
Our IP address, search engines keywords, sites we visit, it’s all traced, unless you know how to do certain settins or you have a command of the web and softwares that go beyond that of normal user. At this point, it is better to use the tools available to try to derive maximum benefit. Staying aware.
I do so. I surf, I click, link, then choose. I filter information according to my conscience and I try to keep up my level of attention so that my every action is deliberate as much as possible.
In this sense I believe that television, for example, is much more subtle and somewhat subliminal.
Returning to the social network, I believe that the huge potential of Facebook is the possibility to subscribe to Groups or ‘Like’ pages we are interested on and receive information, comments, updates.
Every action is reversible. You can hide pages, set the comments and the intrusiveness of the system, making use of this instrument in the most appropriate and best suited way according to our needs.
Noisyvision has its own Facebook page, but we ourselves are members to several other pages where there is an interesting dialogue between users.
We wish to report a list of the most active groups and pages.
Groups and Pages about Retinitis Pigmentosa and Low Vision
- Retinitis Pigmentosa Support Group (The RP Family Group )
- Retinitis Pigmentosa
- Low Vision
- Foundation Fighting Blindness
- The Retinitis Pigmentosa Community
Groups and pages about Deafness and Hearing Loss
Groups and pages about Usher Syndrome
- International Usher Syndrome Network – IUSN
- US FAMILIES (for Usher Syndrome)
- SINDROME DI USHER
- Molly Watt living with Ushers Syndrome
- Usher Syndrome Experiences (U.S.E)
- HEAR SEE HOPE Foundation Fighting Usher Syndrome
- Usher Syndrome/Retinitis Pigmentosa
These are the pages and groups that we follow, but we will be happy to know other interesting ones.
Do not forget to consult our own, which always point out the new articles, videos and interesting information not to be missed.
3 comments from the community
mein Name ist Marcell und ich bin ebnefalls Usher-Betroffener.
Ich habe zum Austausch für Usher Betroffene eine deutsche Facebook-Seite
Ich freue mich auf viele Kontakte und einen regen Austausch.
Viele danke für deine Informationen. Wir stellen deine Facebook-Seite unsere Favoriten hinzufügen