A Holistic Approach to Innovating Cures for Rare Diseases
The Rare Disease Foundation provides a key link between the science of disease research and clinical practice, to accelerate results and discover new cures and treatments.
We do this by operating on a Translational Care Model. This means that every research project we embark on is centered around a patient-centric treatment that incorporates all relevant data sources. From clinician observation and evaluation to patient / family knowledge into the various stages of research. This holistic approach increases the efficiency of research, ultimately impacting the speed of recovery and the way rare conditions are managed.
The average rare disease identification, research, and drug trial process traditionally takes 44 years from the date of inception. However, by engaging and empowering research champions in our Translational Care approach, we have reduced the cycle to 4-9 years for five diseases. A new innovative treatment model can be improving the lives of patients with rare diseases in as little as 18 months to three years.
Research IS Care
There is a global bias that often limits innovative researchers from acquiring the funding they need to find a cure for uncommon rare diseases. Statistically, the rarer a disease is, the less likely it is to be successful at acquiring the necessary research funding to look for a cure or new treatment modalities.
This is of little comfort and great consequence to the patients and families impacted by rare diseases in Canada. For rare disease patients, time is of the essence. The average length of time, from onset of symptoms to an accurate diagnosis is 5 years. Sadly, 30% of children with a rare disease will not celebrate their 5th birthday.
The Rare Disease Foundation’s response to this is our microgrant and Innovative Therapies programs. By providing grants of up to $5,000 CAD and $20,000 CAD respectively to eligible researchers worldwide, we enable researchers who lack funding to pursue answers to uncommon medical conditions. Through our Translational Care Model, we connect our researchers to patients and families who can provide them with valuable information resulting in a comprehensive study.
To date, through our microgrant program, 11 potential cures have been identified in as short as 18 months, at an average cost of $3,500 CAD.