Researchers and citizen scientists alike are able to access many public registries and databases online. There are a variety of registries, each containing different information based on the specific registry. Visit our resources page to find a handful of accessible online public registries.
Starting a Registry
Advocacy organizations play a key role in the advancement of therapies and treatments for diseases. They are committed to the cause in the long-term, able to develop communities of trust, collaborate with diverse stakeholders, and understand the unmet needs of a disease. For these reasons and more, advocacy organizations are in the perfect position to create a registry that can help transform the futures of the disease and the people who are affected by the disease.