For those of you who know me, I have been a teaching computer skills to middle school kids for 17 years!. While I love school now as a teacher, I did not enjoy all aspects of school as a student. My favorite classes were Science and Gym! Social Studies, not so much! Shhhhh….. I really […]
Rare Disease Week in DC … a parent’s perspective Read More »
50% of those affected with Rare Disease are Children! Of those children, 30% will not live to see their 5th birthday. Rare Disease is a leading killer of our children. Nearly a third of the children with rare disease will not live to see their 5th birthday. Rare Disease is responsible for 35% of all deaths (of
50% of those with Rare Disease are Children, 30% will not live to age 5 Read More »
Has my Sunday morning coffee not kicked in? Am I reading this wrong? Tell me it’s not true … Alexion has an “effective therapy” for paroxysmal nocturnal haemoglobinuria New Zealand is proposing to decline access to therapy for its citizens … not because it does not work – they acknowledge it is an “effective therapy” – rather, they
Welcome to the MLD Foundation’s new blog! We’re excited to share about topics of interest to the MLD, lysosomal disease, leukodystrophy, and frankly, the entire rare disease community. Many of you in the general public and the MLD Family know us from the family support we provide to families affected by MLD … MLD Family
