Approximately one third of HRCI members represent patients with rare diseases. While there are over 6,000 documented rare diseases, taken together it is not unusual to be affected by a rare disease. Such conditions are extremely variable in how they affect a person but people living with rare diseases have many challenges in common. These include a lack of research into their condition, lack of medical expertise, lack of treatments or cures and, often, social isolation.
For these reasons, rare diseases need particular attention and the HRCI is committed to improving all aspects of research into rare diseases. We do this in the following ways:
- By convening the national Rare Disease Taskforce, comprised of patient organisations/representatives, researchers, industry representatives and other stakeholders.
- By supporting the joint HRCI-HRB funding scheme, which is the only national funding scheme through which all forms of rare disease research can be funded
- Through regular meetings with Rare Disease Taskforce colleagues with the Department of Health.
- By contributing to annual Rare Disease Day initiatives.
- By supporting our rare disease member organisations in their research activities.
While we show this commitment in the hope of improving the lives of those affected by rare diseases through research, we have also observed that much innovation in research comes from what rare diseases teach us and from the very dynamic rare disease community. Therefore, all aspects of health research benefit from our involvement with rare diseases.