There are some excellent forums and support groups online for people with retinitis pigmentosa. Many provide educational information about RP, but more importantly, they provide group a of participants that support each other. Most of the participants discuss RP symptoms or their life problems created by having this disease. They receive feedback from other members of the group.
1. Retinitis Pigmentosa Community on Facebook
The goal of this group is to spread awareness about RP. They have a chat section where people can ask questions about particular problems and many people share their experiences. There is also an RP Forum with numerous topics. They range from telling your child they have RP to Android phone apps for the visually impaired. The variety of topics is impressive; plus, people have the opportunity to make comments.
https://www.facebook.com/TheRPCommunity?fref=ts
2. Retinitis Pigmentosa Awareness Campaign/Petition
This is a Facebook group from Great Britain that is also working to increases awareness of RP. They have printed RP Information Leaflets, which will be sent to Opticians and Eye Hospitals. Furthermore, they have a section to post problems and ask for feedback from others. They discuss medications, symptoms and normal daily activities.
https://www.facebook.com/groups/32133643258/?fref=ts
3. Facebook Group – Retinitis Pigmentosa
This is another helpful group that is designed to aid people with RP as they discuss issues that affect their lives. It is a great place to make friends and get support to help with the problems that come from living with limited vision.
https://www.facebook.com/groups/2209410974/?fref=ts
4. Retinitis Pigmentosa – research and treatments
This is a closed Facebook group. They discuss treatments and research. The group is geared to have a scientific foundation for discussions. They list a large number of websites that provide information on fighting blindness or are in the field of research and clinical studies.
https://www.facebook.com/groups/299295566853564/?fref=ts
5. Retinitis Pigmentosa Support Group
Patients, family members and friends that are dealing with this disease are all welcome at this support group. Some people tell their personal story, or they ask specific questions related to some problem in their life. They discuss a huge variety of topics.
http://www.mdjunction.com/retinitis-pigmentosa
6. Retinitis Pigmentosa International (HPI)
HPI is set up a bit differently. This organization promotes public awareness, research and education. They publish a quarterly newsletter called “The Night Light” and they have audio and video versions of “Survive Losing Vision.” They have a link to several guides that feature information about retinitis pigmentosa, and they have links that lead to chat rooms.
http://www.familyvillage.wisc.edu/lib_retp.htm
7. I Have Retinitis Pigmentosa
This is an anonymous support group with 53 members at the present time. They discuss their diagnosis, treatments, symptoms and their person stories. The girl that started this group is only 17 years old. This group has newly diagnosed members and others that have had RP for many years. This appears to be a very personally supportive group.
http://www.experienceproject.com/groups/Have-Retinitis-Pigmentosa/99452
8. Daily Strength – Retinitis Pigmentosa Support Group
Daily Strength is a health website with a section dedicated to an RP support group. This again gives people an opportunity to posts problems; then, receive feedback. For instance, they currently are discussing the concentric waves of light that plague people with retinitis pigmentosa. They have a list of all of the topics that have been discussed in the past along with a page of expert answers.
http://www.dailystrength.org/c/Retinitis_Pigmentosa/forum/5490571-getting-those-flashes-again
9. Second Sense – Beyond vision loss
Second Sense provides an opportunity for people with RP to communicate with each other. In addition, they list their favorite resources, and they provide educational information pertaining to lifestyle. Some of the topics include: “Top Ten Products to Help with Daily Tasks” and “Ten Steps to Encourage a Productive Lifestyle.”
http://www.second-sense.org/programs_counseling_rpsupport2012.asp
10. Retinitis Pigmentosa Support Group (The RP Family Group)
This Facebook family group has a picture of two adorable young boys that have RP. There is an explanation of RP and some good general information about the disease. It is very typical of the other supportive groups as it gives people an opportunity to make statements or ask questions that will receive comments.
http://www.mdjunction.com/retinitis-pigmentosa
The emotional support that people with retinitis pigmentosa receive from these groups is so important for them to cope with the deficits caused by RP.
