Patients, or their families, who are affected by rare disease often face the same problems. It can be difficult to find trustworthy local information about their disease and the healthcare they require. There are often limited support groups for their particular condition and minimal research opportunities.
The purpose of a rare disease patient registry is to collect information from those patients who have a particular condition, who may be spread out throughout the country, to provide a means to amalgamate information and to facilitate research into these disorders. This is because in the past researchers have struggled to find enough patients within their own institution to be able to undertake useful projects that could change or improve management. Registries are increasingly recognised as very useful tools in this regard and hopefully can provide a level of support to patients and their families to let them know that they are part of a community rather than isolated.
Having a portal such as this is also useful as a single point of information about several different conditions and some of the shared issues/questions.