Gathering rare disease information from sources you can trust is important. Whether you or a loved one have recently been diagnosed with a rare disease, you’re most likely looking for support, conducting research, and making connections to learn more. There is such a wealth of information available online and via rare disease organizations that finding the specific information you need may be difficult, frustrating, confusing and even potentially stressful. But you are not alone – there’s a vast community here to support and empower you as you seek answers.
Once you’ve found the right community, you feel part of their family. You can ask anything and everything, knowing that there will undoubtedly be someone online who shares your hopes and fears and who’ll benefit from your story as much as you can benefit from theirs.
Below are five websites from trusted advocacy organizations with empathetic sources of good information, real-life stories, and patient-centered support.