Alice’s story

I am a mother of 2 grown up children and was widowed in 2007. After several years with what looked like freckles increasing on my legs I started to suffer from several different unusual symptoms, the worst being excruciating pain in my feet. I would go backwards and forwards to the GP with what seemed 

UK Drug Trials for Systemic Mastocytosis Opening/Expanding

Trials for two new medications for people with systemic mastocytosis are recruiting patients in the UK.   Blueprint Medicines is expanding its Phase I trial of Avapritinib in adults with Advanced Systemic Mastocytosis (Aggressive SM, SM with an Associated Haematologic Disease and Mast Cell Leukemia) and is launching a new Phase I trial of Avapritinib 

Louise and Julian’s Story

My name is Louise, my son Julian is age four, he will be five in three weeks. He was diagnosed with UP two months ago. Julian got chickenpox when he was four months old. He was left with small marks on his skin. For years I assumed they were from the chickenpox. I had no