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.
Want to learn more about Crohn’s and Colitis disease?
Is your family or friend affected with Crohn’s or Colitis?
What kind of disease is this? What food diet fits Crohn’s or Colitis patients?
Visit Crohn’s/Colitis 101
Read about what causes Crohn’s/Colitis disease, who gets Crohn’s, and how can one cope with the chronic condition
LATEST DISCUSSIONS
- 📢 Calling mothers of children with rare diseases of all agesby modsupport on August 12, 2023 at 6:11 pm
Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Warrior Moms Living with Rare Disease Warrior Moms Living with Rare Disease Warrior Moms fighting rare diseases together. Please share the […]
- 7 Things to Look for When Choosing a Doctorby benmunoz on May 11, 2023 at 8:16 am
Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know everything so you should believe and simply follow everything they say? At Ben’s Friends, one of the things we always encourage our […]
- Spotlight on our Member: John aka Jokhere from Living with…by benmunoz on April 26, 2023 at 12:48 am
Sascha Gallardo – March 7, 2020 Polyneuropathy is often characterised by numbness, tingling sensation, burning pain and even paralysis of the hands and feet which can later on progress to the other parts of the body such as the arms and legs. This condition can be either acute, which appears suddenly but resolves slowly, or chronic which […]
- Spotlight on Our Moderatorsby benmunoz on March 29, 2023 at 9:09 am
Ben Munoz – October 31, 2019 When we recently asked our moderators what they love about their role, we got a variety of reactions. Not surprising: each of our “mods” does their job in their own way! Some are very active in the conversation, and others take a more hands-off approach, intervening only when there might be a problem. We think […]
- “Rare Diseases Doesn’t Have Us” – Foot and Float to…by benmunoz on March 29, 2023 at 12:29 am
Ben Munoz – August 15, 2019 We did It! Ten Ben’s Friends members traveled for more than 500 miles on foot and afloat to raise awareness and to raise money to start new Ben’s Friends Communities. This proves that although “WE HAVE RARE DISEASE -RARE DISEASE DOESN’T HAVE US”. We started the night before departing for Glacier National […]