Losing a loved one with CdLS at any age can be life-altering. Parents, siblings, relatives, and friends feel a tremendous loss and often have difficulty understanding why. It is so important that we as a community surround them with support and unconditional love. Although they have lost their child, grandchild, or sibling – they still […]
Join our guest speakers who will share with us the critical information you need to know about special needs trusts. Who should you consider as trustees, what are the important questions you should be asking, and why should you even consider setting up a trust for your family member. What kind of trust is right […]
Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. For more information, contact Gabrielle Nadeau.
There are often challenges when you have a family member with a rare diagnosis like CdLS. All the puzzle pieces that make up your loved one's care can seem so disjointed. Information can be hard to get, hard to understand, and even harder to keep organized and easy to find just when you need it […]