- Posted March 23, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
An Online Community for People Affected by Addison’s Disease
Houston, tx – March 23, 2014 – Ben’s Friends Patient Support Communities (Bensfriends.org), a 501c3 non-profit, recently launched a new website for people affected by Addison’s Disease—a rare disorder affecting the adrenal glands and its ability to produce hormones. The new website, www.addisonssupport.org, is one of dozens of online community sites put up by Bensfriends.org where patients, their families and other people affected by specific illnesses may join to find peer support.
Addison’s disease is a condition characterized by an imbalanced production of hormones and unregulated mineral composition of the body as a result of a damaged adrenal cortex (the outer layer of the adrenal glands). The cortex is responsible for producing hormones such as cortisol and the sex hormones, androgens (male) and estrogens (female). It also maintains glucose, sodium and potassium levels in the blood. These functions help the body regulate its immune response and cope with stress.
The National Institute of Health (NIH) includes Addison's disease among conditions that affect less than 200,000 people in the U.S. population, thereby classifying it as a “rare disease.” Other medical journals call Addison’s disease (and its subtypes) as adrenocortical hypofunction, chronic adrenocortical insufficiency or primary adrenal insufficiency.
“Addison’s disease is of particular interest to some of our members as it appears to be associated with other rare conditions for which we have already provided online support sites,” said Ben Munoz, founder of Ben’s Friends. “This new site (addisonssupport.org) will provide a venue where they can meet and share knowledge and experiences—the kind of peer-to-peer support people affected by rare diseases are looking for.”
Ben’s Friends’ network of online communities is home to 38,000+ members worldwide—mostly patients and survivors of rare diseases. Ben Munoz, himself a survivor of a rare condition called an arteriovenous malformation (AVM), moderates the sites together with a team made up mostly of volunteers. Despite a limited budget, Ben’s Friends has successfully created 36 sites since 2007 along with an “incubation” site for 100+ more types of rare diseases. This success has caught the attention of major online publishers, such as this very recent article on Forbes.com, where Ben’s strategy for building up the organization is featured as a business model.
Those who would like to join Addison’s Disease Support Community may sign up for free by visiting the website, www.AddisonsSupport.org.
About Ben’s Friends
Ben’s Friends Patient Support Communities (BensFriends.org) is a 501(c)(3) nonprofit that builds online support communities for rare disease patients and their families/friends. It was founded in 2007 by Ben Munoz, after an aneurysm threatened his life at the age of 29. While recuperating, Ben saw how peer-to-peer support provides hope to rare disease patients and launched AVMSupport.org.
By the end of 2013, Ben’s Friends had built its 36th community with 37,500+ members while reaching more than 80,000 unique visitors per month. It has also launched a mobile app for members to access support during critical moments (such as a visit to a doctor or while in a hospital), including a database of over 2,000 rare disease doctors.
Other recent accomplishments by Ben’s Friends are:
- Release of an e-book with inspiring stories and helpful tips from Ben’s Friends members.
- Ben’s Friends appeared in dozens of articles including Forbes, TechCrunch (the world's leading tech blog) and the Houston Chronicle (the largest daily paper owned/operated by media giant Hearst), radio interviews and podcasts.
- Listed as one of the Top 50 social media influences on orphan drugs and rare diseases.
Ben’s Friends officially received approval as a 501(c)(3) non-profit organization from the IRS in February 2014. This official nonprofit status opens doors to grants and donors willing to contribute to the mission of building more patient support communities and providing new member services.