Rare Conditions and the Need for Support & Connection
Among various challenges, living with a rare condition can be quite lonely. In addition to often never hearing about their rare conditions until their diagnosis journey, it is common for these individuals to not know anybody else living with these conditions.
This can have a significant impact on a person’s ability to feel informed and supported about their condition, validated in their concerns and experiences and empowered to make the best decisions for their health.
Observations from patient leaders within Health Union’s online health communities reveal that, despite often having a deep bench of family and friends who support them, people with rare conditions often lack the condition-specific support and connection they need. These perspectives, along with findings from Health Union’s In America surveys around various rare conditions, show how online health communities and other social health resources provide people with unique opportunities for support and connection they might otherwise lack.