Our mission at LifeWithCrohnsColitis.org is to ensure that patients living with Crohns and Colitis, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
LifeWithCrohnsColitis.org is part of Ben’s Friends, a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a 501(c)(3) non-profit, Ben’s Friends is a grassroots organization run by patients for patients. It is not a top-down, “expert advice” experience but a community offering peer to peer support. The value of this approach is evidenced by our hundred volunteer moderators, who are either patients themselves or relatives of patients, who believe in the mission and are willing to invest their time and share the knowledge and insights they have gained with members arriving daily in need of help. Ben’s Friends considers the patient perspective in everything we do.
Focused on Patient Support
There are some amazing non-profit organizations all around the world doing fantastic work to raise awareness, raise money, and provide medical information to patients, friends, and family. We decided to complement their work, rather then duplicate. Therefore, we chose to concentrate all of our efforts on learning how to create and run compassionate, responsive patient communities.
Our communities have proved a valuable guide for members seeking to understand their diagnosis, symptoms, and their treatment options. Ben’s Friends provides a friendly environment that allows for bonding. Many a lifelong friendship has been forged on our communities. But most of all, Ben’s Friends is successful because it changes our members’ relationships with their disease. “I have the disease; it doesn’t have me” is a mantra often repeated by members, as they gently guide each other toward effective coping mechanisms and enable our patients to live the fullest lives possible.
Why Rare Diseases?
Global Genes reports that 350 million people worldwide suffer from a rare disease, with an estimated 30 million in the U.S. and an additional 30 million in Europe. So, while each separate disease is rare, being a rare disease patient is not. In fact, 10% of the population in the U.S. is living with a rare disease. There are over 7,000 types of rare diseases, from the extremely rare (only a few documented cases worldwide) to the “common” rare diseases (about 350 conditions, covering 85% of rare disease patients). When factoring in patients with chronic conditions, which may need the same type of emotional support and community fellowship as rare disease patients, the demand for online patient support communities is limitless and bounded only by our own resource constraints and capacity.
- Heads up! Happening soonby benmunoz on August 3, 2022 at 1:32 pm
One day soon, you will point your browser (or your DiscourseHub mobile app) in the direction of www.lifewithcrohnscolitis.org and there you’ll be … in a completely different place! Well, not completely different: the page on which you’ll find yourself will be the new landing page for this community. From there, you will simply have to click […]
- Some tips on how to improve your mental and emotional healthby benmunoz on August 2, 2022 at 8:30 am
Sascha Gallardo – June 7, 2021 Having a rare or chronic illness can be a source of stress. The different symptoms alone, even the mild pain and fatigue, can already lower one’s mood. Add to these symptoms the financial concerns, the worry about the treatment process, and not being able to do some of the things you love. Mental and emotional […]
- Ben’s Friends to launch Ben’s Connections soonby benmunoz on August 2, 2022 at 7:45 am
Sascha Gallardo January 31, 2022 Ben’s Friends communities were created so that people affected by a rare or chronic illness can have a place to connect with others like them. Through the years, we have witnessed countless times how being able to get in touch with other rare disease patients or caregivers has helped our members. As many of them […]
- MakeMeSmile makes donating to Ben’s Friends through…by benmunoz on August 2, 2022 at 6:36 am
Sascha Gallardo – February 23, 2022 Donating to Ben’s Friends through the AmazonSmile Charity Lists program is now easier with the help of MakeMeSmile, a free Chrome extension. Ben’s Friends is one of the charities participating in the AmazonSmile Charity Lists program. Everytime you purchase eligible items through AmazonSmile, you donate […]
- Connect with Ben’s Friends!by benmunoz on August 1, 2022 at 9:50 am
Sascha Gallardo – July 1, 2022 Good news! You can now receive a copy of Ben’s Friends’ quarterly e-newsletter. By subscribing to our newsletter, you will: Get updates about our new and existing projects. Aside from keeping our communities safe and supportive, Ben’s Friends is also working on other projects that will benefit patients, […]