Supportive organizations specific to each rare disease often do not exist, and those that do exist have geographically widespread membership that cannot provide advice on local issues. Parent groups initially started by the Rare Disease, found that when a group of parents sat around the same table, a similar diagnosis was not the binding factor but rather the shared experiences The groups host roundtable discussions and guest speakers. As our online and offline community grows, patients and families will develop a stronger voice as a community of rare disease advocates.
The Family Counselling and Assistance Program is designed to provide counselling on a short-term basis for patients and families coping with a rare disease. The lack of emotional counselling available to families is universally identified as the single most important element missing that could support the family dynamics so critical to the health of the affected child.
We run Community gatherings to allow for both casual and structured sharing time. This is in events such as counselor led workshops to promote the effective expression of feelings and coping mechanisms. Every year, on Rare Disease Day (Feb 28 or 29th in the case of a leap year) we host events to bring together stakeholders to share in the successes of research studies from the past year. It is an uplifting day where everyone can share in the vision of transforming the world of rare disease care.