Alberta Chapter
Rare Connect
Living with a rare disease can be an isolating experience. RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.
Living with a rare disease can be an isolating experience. RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.
The Alberta Porphyria Society has partnered with four students from Community Service-Learning at the University of Alberta. They are working on updating bylaws and policies for the Canadian Association for Porphyria (CAP) which is applying to become - once again - a national, charitable organization registered with the Canadian Revenue Agency. Aidan, Cherene, Jacob and Kristan are working on future revisions of the bylaws and policies for CAP. They bring extensive knowledge and energy to this process and we want to thank them for agreeing to work with us.
