Hi, everyone, I hope this message finds you and your loved ones well.
Ben’s Friends Patient Communities was founded in 2007; I had just suffered a rare form of brain hemorrhage (AVM) and was looking for online support during surgery and recovery. I couldn’t find the support I was looking for, so my friend Scott and I started the first Ben’s Friends Patient Community, a support community for AVM survivors. Since then, Ben’s Friends has created dozens of patient communities and helped connect hundreds of thousands of rare disease patients just like you. What makes us different is that we are 100% non-profit, created by patients, for patients. Thank you for being a part of the largest and most caring network of rare disease patient communities on the internet!
–Ben Munoz
Founder, Ben’s Friends / ben@bensfriends.org
Ben’s Friends’ Mission
To ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, have a safe and supportive place to connect with others like them.
YOU DID IT! YOU HELPED BUILD US A NEW ONLINE HOME!
Our patient communities used to run on software was originally built almost 10 years ago! It took over a year of research and hard work but we finally moved our communities over to a newer and more modern software platform.
The tens of thousands of people who visit our 30+ patient communities every month now have a modern-looking site that is also much more mobile-friendly. Search is better, discussions are more organized, and the sites are much faster to load.
You DID it! Our new online home is 100% thanks to you for volunteering or donating to help rebuild our online home. Extra special thanks goes out to the Mod Support team for their countless hours of behind-the-scenes work and coordination.
Having a rare disease or chronic condition can be quite isolating. Does this sound familiar? Your friends and family have never heard of your condition. Your boss or coworkers cannot “see” anything wrong with you, so they dismiss the severity of your condition. Your healthcare provider gives you a diagnosis, but can’t tell you what to expect. The stress and fear can be overwhelming and nobody seems to understand what you and your family are going through.
Patients and their caregivers may feel like they are alone until they find groups such as Ben’s Friends where they can connect with others who have been on their journey. This is a place to gather information from those who have walked your path, and to share guidance with those who are newly diagnosed and their families.
Sharing what you know about your condition is vital to other patients and families, but it is also important for those who do research on your condition to hear your voice. Pharmaceutical companies, device manufacturers, university researchers, and those focused on the economic and social impacts of living with rare and chronic conditions all want to hear about you to understand the way your condition influences your decisions and impacts your day-to-day experiences.
Rare Patient Voice was created to provide patients with and their caregivers with an opportunity to voice their opinions through surveys and interviews to improve medical products and services. Founded in 2013, Rare Patient Voice has over 100 different panels representing over 30,000 patients and caregivers in the US and Canada. The company’s vision is to be the catalyst for patients in all disease categories to share their experiences confidentially with those who can make a difference for those living with rare and chronic conditions.
Rare Patient Voice meets patients and caregivers at events such as conferences, walks, and educational forums, and invites them to join research panels. Participants receive a gift card for joining the panel, and when they participate in a study, they receive $100 for an hour of their time. Over the past three years, Rare Patient Voice has paid patients and caregivers over $1 million dollars for sharing their opinions. Participants benefit from the process on several levels, as one participant noted, “The money is nice, but getting our voices heard is amazing.”
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Just the Numbers
Communities: 34
Friends: 30,000+
AVM FUNDRAISER A HUGE SUCCESS
Last month, AVMSurvivors.org launched a Indiegogo fundraiser to help upgrade their community. The community raised over $2,000, smashing the goal of $500. Amazing stuff.
If you would like to launch a fundraiser for your community, we can take care of the details. Just email Todd Hall at todd@bensfriends.org.
How You Can Help
If your community has made your life a little better and you would like to give back, here are some ways you can help. Email volunteer@bensfriends.org to get started.
Become a Community Greeter
Say hello to new members and be available to answer any questions they may have. (0-1 hour per week)
Become a Community Moderator
Organize discussions and help make sure the community warm and friendly for everyone. (2-3 hours per week)
Write a Newsletter
Write content for our quarterly newsletter or for one of our monthly newsletters. (1-2 hours per week)
Manage Social Media
Post inspirational content to thousands of followers on our Twitter and FB pages. (1-2 hours per week)
Email volunteer@bensfriends.org if you have some spare time and would like to give back to patients.
