We Build Patient Support Communities for People with Rare Diseases

MISSION To ensure that everyone in the world with a rare disease has a safe place to go for support HOMEPAGE www.BensFriends.org VALUES Impact Integrity Action Grassroots
Our Current Communities: Acute Disseminated Encephalomyelitis Attention Deficit Disorder (ADD) Addisons Disease Adrenoleukodystrophy (ALD) Amyloidosis Arteriovenous Malformation (AVM) Ataxia (International) Ataxia (U.S.A.) Atrial Septal Defect Brain Aneurysms Charcot Marie Tooth (CMT) Chiari Malformation Crohn's Disease Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Disabilities Eagle Syndrome Ehlers-Danlos Syndrome (EDS) Erythromelalgia Fabry Disease Fibromyalgia Glossopharyngeal Neuralgia (GPN) Guillain-Barre Syndrome (GBS) Lupus Lyme Disease Multiple Myeloma Myositis Narcolepsy Nephrotic Syndrome Primary Sclerosing Cholangitis (PSC) Psoriatic Arthritis (PsA) Sjogrens Syndrome Synovial Sarcoma Traumatic Brain Injury Trigeminal Neuralgia (TN) Von Willebrand's Disease (VWD) Other Rare Diseases

Openness Positivity Fun Focus

STATS (BY THE #S) 30+ Support Group Communities 35,000+ members (up -2,000 in early 2010) 80,000+ unique visitors monthly Still 6,000+ rare diseases Still 25,000,000 Americans with rare diseases (&) many more worldwide SOME BEST PRACTICES FOR COMMUNITIES Involve Get members involved early Tailor Focus on members needs/wants & update regularly Recognize Feature best members Enable Easy tools to post content, refer friends, etc; clarity; pictures WAYS YOU CAN HELP Raise awareness among fans and employees (we can provide info/writeups/flyers/ talks) Links on website(s) to BensFriends.org and our communities Twitter (@bensfriends) & Facebook mentions Emails and joint marketing Sponsorships also available CONTACT INFO Eric D. Kroll ekroll@bensfriends.org Bens Friends info@bensfriends.org

Know someone with a rare disease? Refer them to www.BensFriends.org