Rare Disease Day: Baby Ethan’s fight against Hyper IgM Syndrome
Today is Rare Disease Day It’s a day of observance held to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with a rare disease and their families. Over 300 million people worldwide live with a rare disease, according to Rare Disease Day. Sadly, one of those is Baby […]
2 years ago
What it’s like…. parenting a child with a rare disease in Ireland
Anne Marie Harte Walsh, from Castlebar, Co Mayo, is mum to Lewis, age 5, who has Duchenne Muscular Dystrophy. Duchenne muscular dystrophy (DMD) is a genetic disorder characterised by progressive muscle degeneration and weakness. It is one of nine types of muscular dystrophy. DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells […]
10 years ago