When hosting their monthly meetings, the Alberta Parent 2 Parent Resource Network #AlbertaRAREFamilies continues to keep its members engaged. Recently, over twenty brave campers headed out to Ol’ Macdonald Resort to enjoy campfires, s’ mores, and train rides! It was a wonderful opportunity to meet new families, to rejuvenate, breath deep and connect. Although Mother Nature did not offer…
MPs from four parties unite for Parliament Hill flag-raising to mark International Rare Disease Day Federal government urged by the rare disease community to implement Canada’s Rare Disease Strategy by adopting a federal Orphan Drug Regulatory Framework and by working with provinces to address gaps in patient access to rare disease treatments OTTAWA – February…
Please join me in congratulating Juan Flechas on a very successful first IronMan race, and also on his recent engagement as well!! He dedicated his race to his brother who lived with rare disease and raised funds and awareness for our foundation in honor of him. He has chosen to put the dollars raised towards…