- Posted March 1, 2013 by
Bensfriends.org Posts Milestones on Rare Disease Day 2013
Bensfriends.org champions people who suffer from rare diseases by raising awareness, fostering connection and empowering them. In 2012, the global social enterprise surpassed performance milestones despite meager resources, making it a major online social media advocate for orphan diseases.
AUSTIN, TX – February 28, 2013 – Ben’s Friends Patient Communities (Bensfriends.org), a global organization which helps build online communities for patients of rare diseases, shared their highlights last year as they participate in activities worldwide on Rare Disease Day, February 28, 2013..
Bensfriends.org has reached a number of milestones for 2012 including number of members signed up, site visits and activities. It has also succeeded in tapping other likeminded organizations that provide access to expert information, financial and legal assistance for rare disease patients and their friends and families.
During 2012, Bensfriends.org launched seven new communities, bringing the total to 33 rare disease patient support communities. The new communities are Amyloidosis Support Network, Guillain-Barre Support, Living with Narcolepsy, Life with Fabry, Lyme Disease Support Network, Sjogren’s Syndrome Support, and Traumatic Brain Injury Support.
In the beginning of December 2012, Bensfriends.org achieved a very important organizational milestone by signing up its 25,000th member. Seven communities exceeded 1,000 members within the 12-month span (for a total of nine communities with 1,000+). Its AVM Survivors group also reached 5,000 members within the same period.
Making its Mark on Social Media
Bensfriends.org’s patient communities have drawn significant interest and traffic, hitting over 520,000+ page views by December. More than 73,000+ unique visitors clicked on their sites during the month to view more than 10,000+ blog posts and almost 20,000 discussions now included in their community archives.
With a Twitter following of 2,100+ and close to 18,000 followers across its Facebook pages, Bensfriends.org has held the No.1 spot for most influential social media mentions for #raredisease for several weeks in Symplur Healthcare Social Media Analyst’s website and has figured consistently in the top ten for most mentions and tweets.
Leaving a mark on the web has resulted in Bensfriends.org being featured in several interviews during the year, including one with The Guardian at the height of the landmark US Supreme Court decision on healthcare reform in June 2012.
To further boost accessibility for its members, Bensfriends.org made available most of the 30+ patient communities on mobile starting in July 2012. The feature makes discussion streams accessible even to members who are on the move.
The webpage designs were also streamlined to allow for quick downloading and easy navigation. The content in the community pages are maintained by 130+ volunteer moderators from various countries, mostly patient members and their caregivers.
New Partnerships Forged
Another unprecedented achievement for the past year is the number of newly established partnerships with other organizations dedicated to the welfare of rare disease sufferers. Bensfriends.org has partnered with 2ndMD, RareGenomics, RareDisease-UK, and My Health Teams for medical and research services, GoFundMe, Friends of Treasure, and The Disability Digest for financial assistance and The Social Security Law Group for legal assistance and federal insurance issues.
What’s ahead for 2013?
Bensfriends.org looks to expand its reach more on 2013 with participation in major events on rare diseases globally. Speakers from the group are already booked to present the story of Ben’s Friends Patient Communities in February, April and June 2013.
New sites are being planned to cover more rare diseases and conditions while the current set is being upgraded to encourage more member activity. Partnerships are also being eyed, with health insurance coverage and employment opportunities for member patients as top priorities.
“We’ve had an amazing 2012. The love and compassion members show each other is the reason why we are family here,” said Ben Munoz, founder of Bensfriends.org. “When people I talk to hear about the family we’ve built here, the first thing they say, is “Wow!” The second thing they say is, “How can I help?””
The organization is run on a shoestring budget and is financed by voluntary contributions from people around the globe. Volunteer community moderators, who are also patients, make the communities a warm and informative destination for patients of rare diseases.
Those who want to support Bensfriends.org and their activities in 2013 may send donations and find more information on their fundraiser through www.BensFriends.org.