For patients with prevalent diseases, it may be easy to find others with your condition. You meet them at clinics; you run into them when seeing your specialist; or you participate in one of the support groups in your area. For those with rare diseases, the simple act of finding another patient like you isn’t always as easy. You might be the only patient your doctor has seen with your condition. Finding another patient often becomes a goal and sharing and learning from them a welcomed reward.
Alongside NORD and EURORDIS, we are celebrating Rare Disease Day and they’ve deemed this year’s theme “Rare, but Equal.” At PatientsLikeMe, patients are patients, no matter what their condition. Patients with rare diseases are sharing their health information alongside patients with more widespread conditions.
So, who do we have sharing information about their rare disease? To date, more than 455 patients with Multiple System Atrophy and 122 patients with Progressive Supranuclear Palsy, both neurodegenerative disorders that mimic Parkinson’s disease, have joined our community. Do you have Neuromyelitis Optica, the autoimmune inflammatory disorder affecting the spinal cord, optic nerve, that has lesions often misdiagnosed as multiple sclerosis? There are 332 patients just like you. Sharing right alongside these patients you’ll find 388 patients with Progressive Muscular Atrophy (a rare subtype of ALS which only affects the lower motor neurons) and 331 with Primary Lateral Sclerosis (a subtype of ALS which affects the upper motor neurons).
Many of you also know that we actually started PatientsLikeMe focused on the rare neurodegenerative disease, ALS. Six years later, there are now more than 4,000 ALS patients-plus almost 20% of the newly diagnosed in the U.S. every month-sharing their journeys and learning from one another. (You can read about highlighted milestones in our 2010 ALS Awareness Month blog.) In 2011, we’ll continue our heritage of serving those with rare diseases by improving this overall experience of finding a “patient like me.”
There are no major awareness raising pink ribbons or yellow wristbands for these rare diseases. But, there is a group of patients who have found each other, who are sharing with one another and the world their disease experience. And, that will translate to accelerated research and better outcomes – two things we are hoping to make a little less rare.