3 ways to offer better support and companionship to people with rare disorders
than other types of support, includes engaging in leisure activities with people and generates a sense of belonging.
This large-scale project surveyed 1,203 adults living with any rare disorder in the United States . A total of 232 different rare disorders were represented. Participants were asked to rate their levels of the four types of social support, stress, and satisfaction with life. We found that only companionship support and emotional support predicted life satisfaction, and companionship support was the strongest predictor.
Giving social support can be more powerful than receiving it. People who have been connected to the rare disease community for a long time find meaning in volunteering, advocating, and mentoring others who are newer to the disorder.There are many accessibility issues to these sources of support, such as distance, cost, and a lack of accommodations for the varied symptoms of rare disorders.
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