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Ben's Friends Patient Communities

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Nonprofit Overview

Mission: Our mission is to ensure that patients living with rare diseases or chronic illnesses , as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

Results: We operate 30+ rare disease online communities and help 100k patients per month.

Target demographics: patients living with rare diseases or chronic illnesses , as well as their caregivers, family, and friends

Geographic areas served: All over the world, where ever you can access the internet.

Programs: support and hope.

Community Stories

38 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

After years of being unwell but a mystery patient, I received a diagnosis of Psoriatic Arthritis. In a panic, I googled and came across the Ben's Friend' LivingWithPsoriaticArthritis.org community. I joined immediately. To my surprise, everyone there "got it" and understood what I was going through. When my treatment wasn't working well, it was the group that gave me the information and "push" that I needed to go in search of the best treatment I could find. Because of their help and encouragement, today my disease is in remission, and I feel better than I have in decades.
Without Ben's Friends, I can't imagine what my life would be like today.

1 Donald23

Volunteer

Rating: 5

Great support site for Mast Cell Disorders and MCAD.

1

General Member of the Public

Rating: 1

The site in most cases would appear to be very supportive, unfortunately some of the moderators in the group are abusive at times. Imagine coming to a group for support and being abused by the ones you expected support from. It was the behavior of a few that was enough to encourage me to leave the page and find support somewhere else.

1

General Member of the Public

Rating: 5

My quality of life has improved immensely from the information, tips and support I have received from other Psoriatic Arthritis (PsA) patients. Tips from other PsA patients have helped me reduce pain without drugs, provided me a guide on how to talk to my doctor about my debilitating fatigue and cheered me up when I was feeling very, very low. As a result, I don't need pain meds often, I got a prescription to help with my fatigue - yay !!! and I'm feeling very optimistic about my future.

Thank you Ben's Friends - without you I'd be alone, too tired to do anything and depressed.

2

Volunteer

Rating: 5

I recently discovered this website and have found it to be extremely helpful. I encourage anyone who is dealing with this disease to visit it....many helpful tips and inspiration people.

1

Client Served

Rating: 5

I have Psoriasis and Psoriatic Arthritis.....If I hadn't found the loving support and knowledge from LWPA I don't know what I would have done! They are a God send!!

1 Wanda16

Volunteer

Rating: 5

If it wasn't for The Generosity and Kindness of LWPSA I dont know where I would have turned. They were an Awesome Support System When I Got My Diagnoses. So Greatful I Found this Site. Keep Up the Great Work !!

2

Client Served

Rating: 5

I was diagnosed with Eagle Syndrome at the end of summer 2014 and could find very little information about it on the internet or from the doctor who diagnosed me. In my search for knowledge, I came across the Ben's Friends website. WOW! Suddenly a whole new world of information about ES was opened to me through the posts of people who shared my ailment. This site has been amazingly helpful, and the people who respond to my posts are so very supportive and encouraging. I am now in a position to offer advice and encouragement myself. I have made some good “eFriends” here as well and am so thankful for the love and support I receive from them through emails, posts, and prayers

1

Client Served

Rating: 5

I am amazed at how great I feel when I read posts about subjects that I've had problems with or topics I've wondered about but didn't have anyone I could talk to who would understand. This site is wonderful. I love the support and warmth I feel when reading posts from others and also when I start a thread myself. The answers are always supportive and frequently helpful. This site feels like home to me

2

Volunteer

Rating: 5

This is the best site for people with an AVM. if you need information or support, check out avmsurvivors.org. It's just one of many rare conditions Ben's Friends supports. Thanks Ben's Friends!!

1 BaltimoreBaby

Volunteer

Rating: 5

After I was diagnosed with Fibromyalgia, I needed to understand how my life would change. I searched for information online, only to find out that my disorder was rare and incurable. That frightened me. I knew I needed to connect with other Fibromyalgia patients for support. The one online support group that really stood out was Ben's Friends' Living With Fibro. I could see just how special this community was from reading only a few discussions. I decided to join, and in the few years I have been a member, it has come to mean so much to me. I know I can always come to the site for the latest evidence-based information on my disorder and to just find a place where I will be understood by other Fibromyalgia patients. Ben's Friends is where I turn to for a positive exchange of emotional support and coping strategies for living my best with this disorder.

I am a volunteer moderator on the site now, and I have made friendships there that I know will last a lifetime. There is no rare disease patient support network as exceptional as Ben's Friends. Thank you, Ben's Friends, for all you have done for me.

4

Volunteer

Rating: 5

I joined AVM Survivors (Arteriovenous Malformation) shortly after I had my surgery and it was the best thing I ever did, especially in the days of my healing. The site was such a godsend to me, with so many groups, discussions, new friendships and a place where people actually understood what I was going through emotionally and physically. After my recovery was over, I decided to become a Volunteer/Moderator on the site and give back to the community that helped me so much. Anyone diagnosed with a rare disease, MUST check out Ben's Friends and become a part of that patient community :).

4

Client Served

Rating: 5

I found Ben's Friends to be a gold mine! After I was diagnosed with a rare disease, I felt like I had no one to talk to about it because no one else had ever heard of it before. Then I found Ben's Friends and now I can talk to many people all over the world who have also been diagnosed with this same disease or are friends or family members of patients diagnosed with this. I found that extremely helpful. Also, I was able to find a doctor in my area who has treated this condition before. How fantastic is that!? Thank you to Ben and everyone who has made this site possible!!!!

3

Volunteer

Rating: 5

I found Ben's Friends after my doctor recommend I find a support group for Lupus. After a couple of years and great support and information I became a moderator. I have found friendship and valuable information. This is a great place for people who are at home or in the work force. Their is information for every one.

3

Client Served

Rating: 5

Hello,

I am a member of the Ben's Friends Fibromyalgia support community. When I was first diagnosed with Fibromyalgia, the primary supports I had in my life were my mom and husband. Although they are very supportive, I needed a place where I could go and connect with other individuals experiencing the same struggles, trials and tribulations I was experiencing. If you don't have this diagnosis, it is very difficult to truly understand what we go through on a daily basis. Not only have I made friends through this community, I have become a community greeter to welcome new members to the site. Simply stated, I can't imagine a life without the Ben's Friends communities. It would be a tragedy for myself and many members to lose the support, information and connections that we develop from this support site. I am a social worker and understand the role of online support groups and how important they can be in a persons life. I feel safe, supported and welcome in this community. Not only has it been beneficial to get support from this community, but it has been an amazing experience to offer support to members as well.

3

Volunteer

Rating: 5

People with a rare disease face challenges in lots of ways: getting diagnosed and finding specialists skilled in managing their conditions, finding ways to help loved ones understand what is going on.. The list goes on. Ben's is a fantastic community for a number of rare diseases that demonstrates true community spirit globally. People often arrive confused, scared or feeling isolated and after a few weeks have formed friendships that can last a lifetime. They find options on how to live better with their conditions from others who have had similar experiences and challenges. Sometimes, just having someone really understand what you're going through makes life a lot less scary and lonely. Its a great place to share thoughts and start planning how to live your life to the max, regardless of your condition. It also has heaps of information for those supporting their loved ones.

3

Volunteer

Rating: 5

I have Idiopathic Spinocerebellar Ataxia and am a member of Living with Ataxia.
Before joining the group I felt very alone with this rare progressive degenerative disease, it was a revelation to discover other people felt the same as me, they understood my symptoms. Support groups are essential for anyone coping with
a challenging condition.

5 Mark170

Volunteer

Rating: 5

I have been a moderator for a couple of years now for both the CIDP (Chronic inflammatory demyelinating polyneuropathy), and the GBS (Guillain–Barré syndrome) communities on "Ben's Friends". I have enjoyed working with all the great staff & members of both these communities. This is where people who have these disease's can learn more about the disease or share their story/comments with others.

"Ben's Friends" have numerous communities to help people who need information about their disease/disorders, or just need a place for emotional support. I have found so many members in these communities are very supportive and love to share with others.

I am proud to be a member of such a great non-profit organization as "Ben's Friends".

4 Darcy T.

Volunteer

Rating: 5

I was diagnosed with light chain amyloidosis on 5/29/12. I engrossed myself in the research on the illness and began to search for groups where I could learn more, share what I have learned and experienced, and provide some support as possible. Ben's Friends has allowed all of that. It is a wonderful group of people who are willing to share, to ask, to find out, and to just allow others to vent their fears and concerns. I am so thankful to have found the group!

3

Client Served

Rating: 5

I have gained so much from the Livingwiththeeagle community- I was floundering when first diagnosed as my doctor knew so little, but through BFs I learnt the treatment options, and was able to find a doctor who could help me. The emotional support has been amazing, I've made friends across the world! And now I'm in a position to volunteer to give others the support I've had the benefit of. I also go on another site for an as yet undiagnosed condition, and through that again I've gained support and information- and the moderators all have the condition, so all know what people are going through.

3 Yvonne J.

Volunteer

Rating: 5

I was diagnosed with chiari malformation last month and I have an upcoming decompression surgery July 8th. I found Bens friends to be very helpful because there are a lot of people sharing experiences which I found to be very helpful.

3

Volunteer

Rating: 5

Ben's Friends Rare Disease Community is the driving force for people to find and give support. Personally, I am on the Brain Aneurysm Foundation Support Group. In my semi rural area of North Carolina, there is no support group which I could physically attend. I have learned and relearned so much being a part of this community; I haven't the words to express my gratitude. When asked to volunteer, I believe this simple act of kindness and affirmation that I was still able to help others vastly helped me in my healing journey. I have met other volunteers from other communities who give me much support in trying to problem solve for members in the community I belong to. There is laughter, some tears and an amazing amount of positive support. I would not be developing into the person I am without their help!

5

General Member of the Public

Rating: 5

This site serves as a great tool to share with others your own personal experiences with a disease as well as give others confidence and suggestions on what are possibilities to also treat theirs. So many new diagnosis happen every day while some of us have been battling our diseases for years, me personally was diagnosed with SLE, Systemetic Lupus back in 1992 and in addtion Discoid has become dominent about 1 1/2 years ago. Cudo's to a site where you can reach a vast majority of people who can share and benefit by other fellow battlers.

4

Volunteer

Rating: 5

I came across Ben's Friends quite by chance, when looking for people to talk to about my recently diagnosed Fibromyalgia, a few years ago. Immediately I was welcomed and I felt safe to ask questions, I also learned about all the different ways people manage this condition. What became apparent quite quickly is that this is a very positive site. There are a lot of moanings and groanings in this world, and people who are a lot worse off than me.
It is very easy to become depressed, and there are many people who are, but there is good support here to help with that.
AnneV

4

Client Served

Rating: 5

I'm a part of both the lupus and CIDP communities Ben's Friends has provided. If not for the knowledge and support I've gotten through Ben's Friends, I'm not sure I would even be here today... The forums provide such great support for people with rare illnesses especially. I truly can say that the Lupus and CIDP forums are what got me through the hardest, loneliest, and seemingly hopeless times in my journey with chronic illness. The service they provide is not only priceless, but the help and sense of community given to those of us who have become a part of one or more of the many groups has done so much good that the loss of them would be devastating to many people.

4 Stephen45

Volunteer

Rating: 4

I am part of the Primary Sclerosing Cholangitis community with over 1,000 members and growing weekly. It has been of tremendous help to me as I have PSC after suffering from Ulcerative Colitis and Crohns for many years.

Nothing is more helpful than talking to others in the same situation. We have members from around the world. The perspectives and experiences people share has been very value able to me.

6

General Member of the Public

Rating: 5

I'm a member of the chiari malformation forum. The forum has been very helpful Ito provide information and share stories about what others with this disease go through. I've been on other sites and they can be very negative to members. But this site is always positive.

5 Elodie E.

Volunteer

Rating: 5

I've been part of the Synovial Sarcoma Ben's Friends community for years now. I've learned a lot from fellow patients thanks to the community. I feel like I am better equipped now to face my disease and the various challenges that come with it.

4

Volunteer

Rating: 5

I have an ultra rare form of Muscular Dystrophy, and there are not many of us around. Spread throughout the world, this is a great place to come together and share with others facing the same challenges.

4

Client Served

Rating: 5

I recently joined one of the many patient communities they serve. It's a great place where I can share and learn with others like myself. Now it's more about helping others find their way with all the diffulties they face day after day. I don't feel so alone and want to help those that are struggling even more than me. It's easy to find information and connect with others on the website. I'm so glad I joined a growing and valuable patient community!

5

General Member of the Public

Rating: 4

The site looks good, (livingwithfibro.org) & it's easy to navigate. It's about the community not ads and selling stuff.

5

General Member of the Public

Rating: 5

I come from the UK and I could not do without the support I get from my online family this is a one n a million site keep up the good work xxxxxx

5

Volunteer

Rating: 5

Ben's Friends is a great start to my day, I go and look for some inspiration and support, sometimes it can be a picture, words that speak to me or an interesting article. It is a great way to give back to our community which for me is important.

6

Client Served

Rating: 5

My community on Ben's Friends is wonderful and caring. All of the members, Greeters and Moderators I have interacted with have the condition and so have special understanding. Many of our chronic illnesses are isolating especially when family and friends don't understand what we are going through. Our conditions make it impossible to attend support groups in person, if they even exist. This online community is the support in my life and I am very grateful.

4

Client Served

Rating: 5

Wow, what a wonderful and supportive community! I have been very blessed by finding this support site. The people there understand my conditions and are great at giving support and feedback. I have learned a lot, not only about myself but about other rare conditions. Oftentimes, people with chronic conditions look "normal" on the outside and it can be quite difficult for others to understand the challenges. It is so nice to have a place to go where everyone understands. I have been part of various online and in person support groups over a number of years and Ben's Friends is by far and away the best site!

General Member of the Public

Rating: 1

Ben's Friends use to be a wonderful community with great support from members but since the change its nothing more than a boring place, very little input that is useful. Non of the mods actually have the disorders of the forums they are over seeing and many many members left after the change and have never returned. Yes, all communities have their members or Mods that are over bearing and I am happy that I left way before it changed. I lurk now any again but for the most part want no part of the new format, the new Mods or the lack of care, compassion and understand to each other that the "original" members and Mods had.

5 tj258

Client Served

Rating: 5

This was the first site I found when diagnosed. 5 years later I'm still around. I give credit to my community for keeping me moving forward because of both support but evidence based information that is not the usual internet "alternative treatment" nonsense that dominates too many patient sites. I appreciated the immediate action taken when I was being pressured into medical decisions and given advice by several members that just didn't line up with what my medical team was telling me. Few peer to peer networks have the level of moderation that these do. Perhaps that is why the community I am part of now has over 3000 members and more everyday

9 Madere O.

Volunteer

Rating: 5

I first joined Ben's Friends as a frightened parent whose son had a rare facial avm. The avm community took care of me and supported me and helped get my son a great outcome. Though my son is quite well now, I never left Ben's Friends, as I could see more people arriving every day who needed the same help and support as I did. I continue to see the amazing positive changes that Ben's Friends makes in the lives of patients every day, and I am proud that I am one of the people who helps make those changes happen. There is something else, too -- Ben's Friends really does forge friendships. My closest and best friends are all people I met through Ben's Friends. Though I recently moved to another continent, those friends are still with me, and I speak to them every day.