Children have the right to rare disease support
Children living with rare disease, and their families, have the right to join groups that support them. Support groups and non-profit advocacy groups provide help to children and families living with rare disease. These groups have well developed initiatives and networks, promote public awareness, medical care, research, and provide other helpful activities for children and families living with rare disease. Groups may be condition-specific, general support groups, or umbrella groups – that support families living with rare disease, in general. People living with rare disease in remote or isolated places are now better able to connect in online groups. These online groups can also help those with ultra-rare diseases, who may have no other contacts within their city or state. The importance of these groups and the hard work of the individuals running them cannot be overstated.
Link to WA Adult Rare and Undiagnosed Conditions Support Group (WA ARUCS): https://www.facebook.com/groups/391846148141432/
For more information about where to find support groups: