Rare Disease Day 2011: “Rare, But Equal”

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… Continue reading Rare Disease Day 2011: “Rare, But Equal”

Charting the course of PLS and PMA

Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA) are two rare variants of the disease ALS. Normally, ALS affects the upper motor neurons in the brain and spinal cord, as well as the lower motor neurons that send signals from the spinal cord directly to muscles. PLS and PMA are different because PLS only… Continue reading Charting the course of PLS and PMA

Rare Diseases: Well-Done Online

There are rare diseases, and there are rare diseases. Here at PatientsLikeMe our first community was built for patients with ALS (estimated US Prevalence: 30,000), and in common with our other neurological communities there is a familiar list of challenges: low public awareness, little funding for research, and a lack of adequate treatments. However, over… Continue reading Rare Diseases: Well-Done Online