The emergence of COVID-19 has disrupted our society’s foundations, destabilizing our work, family and recreational culture incurring great emotional, financial and physical distress.
For the already vulnerable rare disease community, nearly 3 million people in Canada alone, the COVID-19 pandemic has presented a unique set of challenges. Social distancing, reduced access to daily living needs and regular health care services have aggravated already difficult living situations.
The Glowing Hearts Campaign is the Rare Disease Foundation’s compassionate response to the rare disease community’s three distinct needs during the COVID-19 crisis.
While the global research and development community rushes to find answers for the mainstream population, there is a vulnerable population that doesn’t fit into the common narrative.
1 in 12 people (8%) have a rare disease and there are over 8,000 rare diseases in the world. Since research efforts traditionally cater to a larger patient population, sadly rare disease patients do not meet the population requirements or objectives for life-saving research to be performed.
This is where the Rare Disease Foundation fills this gap. Together with our partner, BC Children’s Hospital Foundation and other collaborators, we are funding the following COVID-19 research projects to benefit children who live with rare diseases.
The Rare Disease Foundation is preparing to support our community through this global crisis and beyond by connecting rare disease community members with mental health providers for individual online counselling sessions at a significantly reduced rate.
Are you a community member facing barriers to access food and medical supplies during this time of crisis? Our Glowing Hearts Gift Card Program will ensure you can safely and efficiently receive supplementing gift cards. We are currently partnered with Walmart Canada to provide our community with their grocery and medical supply needs! More partners will be announced at a later time.