Small but mighty. Sometimes we forget that in this time of uncertainty and turmoil, it’s the little things that bring us the greatest comfort and lead to the most important personal and cultural breakthroughs. No one is more aware of this truth than the rare disease community.
Dr. Millan Patel, M.D.
Co-Founder and Chief Medical Officer, Rare Disease Foundation
Faced with the chronic stress of the journey of diagnosis, treatment, and often great loss, we have seen families rise to the challenge with inspirational resilience, but we have seen as many families exhausted and depleted, both physically and mentally.
The COVID-19 pandemic has exacerbated challenges and highlighted the vulnerabilities of this community. Funding has dropped off dramatically and many of the most helpful services have been interrupted. The already small social supports have been stretched and most research was put on hold at a time when the need was even greater than before.
This unique situation underscores the need for a patient-centric, Translational Care approach for disease understanding and patient support. This means the patient is the catalyst and works in conjunction with clinicians and researchers to make key observations, develop research ideas, and find new avenues of treatment and care to explore.
Since 2008, Rare Disease Foundation (RDF) has employed this approach using a small but mighty philosophy in awarding $5,000 microgrants for rare disease research projects. Many of these small projects have grown into much larger endeavors; one in particular turned into a $2.25 million research project with a major Children’s Hospital Foundation. All from a tiny seed of an idea and a grassroots organization supported by many small donations!
Providing support for rare disease patients
Mental health and wellness support is just as critical as research funding to the rare disease community.
Rare disease patients, their families, and caregivers struggle with mental health issues, social isolation, and financial burdens. According to a survey conducted by the Canadian Organization for Rare Disorders, almost 80 percent of rare disease caregivers suffer from mental health concerns as a result of their caregiving responsibilities.
The stressors of being diagnosed with a rare disease weigh just as heavily. A 2017 survey conducted by Kathleen Bogart, an associate professor of psychology and a rare disease patient herself, found that rare disease patients had a significantly higher prevalence of anxiety and depression compared to the general population.
Hope in action
The good news is that mental health can be improved over the course of one’s life with the right supports in place. One major shift in healthcare as a result of the pandemic is the rise of telehealth, which reduces barriers to access.
As an example, in response to community needs during the COVID-19 pandemic, RDF developed a Mental Health and Wellness program that specifically funds counseling and related mental health supports for the rare disease community.
Even though donations were drastically reduced during the pandemic, RDF prioritized funding for the community in this way, and was able to subsidize more than 200 counseling sessions in 2020 and 2021. Due to positive participant feedback, the program received extra funding from a major donor that will allow the program to expand this year.
As we emerge from a devastating worldwide pandemic, now is the time to ramp up support for children and families navigating a rare disease diagnosis or care journey.
Technology continues to provide new innovations, and we at RDF continue to look for collaboration and strength through our rare disease community, researchers, advocates, donors, and supporters as we come together to highlight the importance of funding rare disease research and mental health support programs.