Clasina Field became a Rare Disease experience specialist when, after ten years of progressively debilitating symptoms which eluded diagnosis, she had no choice but to retire as a teacher, counsellor and school administrator. Several years later, and after significant social, emotional and physical damage, she was diagnosed with a rare disease. Eventually, modern pharmacology supplied her with brilliantly successful treatment, but her true rehabilitation came in the form of an online support forum at Ben’s Friends. There, shared experience, companionship and mutual understanding helped her to put her personal, social and emotional experiences of having a rare disease into productive perspective. Over several years, she adapted her broad educational, counselling and administrative skills to the online world, and she got back to work, first as a community moderator, and then as a lead network moderator. Now a card-carrying geriatric patient, Clasina is enjoying the challenge of helping provide safe and supportive virtual communities for people like her, through her work as co-Executive Director of Ben’s Friends. Having “e-met” and “e-supported” hundreds of rare disease patients from all over the world, she has come to the conclusion that medical treatment is only part of the rare disease patient solution. Anecdotal evidence — as reflected in the candid stories and interactions of patients in their home environment — tells the true story of rare disease patient experience. And those stories are evidence that researchers would do well to take into account. Online support communities may offer an observation window to contribute to that understanding.