There's an old fable that reminds me, in a way, of primary myelofibrosis, or PMF: A shepherd is in the desert with his camel, and as night approaches, he pitches…
Anyone living with Kallmann syndrome (KS) faces multiple symptoms: no sense of smell delayed puberty possible infertility complications affecting the kidneys, ears, heart, eyes, and parts of the brain Patients…
Current treatments for cervical dystonia provide inadequate relief to many. Dystonia twists people and leads to strange postures, involuntary movements and pain. It affects men, women and children. Check out more…
Rare Disease knows no party affiliation! Let’s pass the 21st Century Cures Act in the lame duck session ! The Everylife Foundation Action Center is calling for your action on November…
When that moment happened, and again I don’t know when it happened, but when that moment in my head just clicked and I stopped being, or stopped putting myself in…
I’m impressed of with the direction of the Fabry Support & Information Group (FSIG) and the offerings they have. In August 2016, they had a Fabry Family Get Together at…
Talking to the parents or family of a child with a serious illness can be nerve-racking and uncomfortable. Sometimes avoiding the family can seem easier than facing a difficult situation.…
Serendipity (n): la aparición y el desarrollo de los acontecimientos por casualidad en una manera feliz o beneficioso. Como muchos de ustedes probablemente saben, el viaje a un diagnóstico cistinosis…
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