This month Rare Revolution’s online magazine recognises the unrelenting mental and physical strains of caregiving, and how essential it is that caregivers are provided with more emotional, physical and financial support to show that they are valued and appreciated. A...
The Rare Disease Foundation has published five helpful videos on their YouTube channel from their recent Mental Health Webinar. Subjects include: 1. Creating relational bonds with your children and understanding healthy relationships 2. Working through anxiety and...
Courageous Parent Network has published a guide Communicating Effectively and Compassionately to Help Siblings Cope. It is written by a psychologist and grief counselor and includes tips from fellow parents. “From the time that their sibling is diagnosed with a...
The Canadian MPS Society welcomes the news that the Government of Quebec has unveiled its policy for rare diseases which affect approximately 700,000 people in the province in order to improve the accessibility of health care and services adapted to the needs of...
Lysogene has just provided promising data from their clinical trials for the efficacy of Gene Therapy LYS-SAF302 in the treatment of MPS IIIA. Read Press Release >
