What Kind of Support Do Patients Want?

In honor of Rare Disease Day, we asked patients and caregivers how others can best support them as they manage complex medical conditions.

Story
Arthur, who lives with CIDP, says people can support him by understanding he is not as strong as he looks and has days when he doesn't feel energetic.

People living with rare diseases want and need support. But what shape should it take? We asked 10 patients and one caregiver exactly how they would like to receive support from the people in their lives and from their communities. 

Stacy, who is living with primary immunodeficiency, says people can support her by taking a minute to talk with her about what it's like to have a PI.
Rick, who is living with hemophilia B, says people can support him by allowing him to "be the best me."
Kristin, who is living with von Willebrand Disease, says people can support her by being with her and by not being grossed out by blood and needles.
Lisa, a caregiver for someone living with hereditary angioedema, says people can support her by raising awareness about HAE.
Lynne, who is living with primary immunodeficiency, says she felt supported by hospital staff during a recent knee replacement. She says patients need to tell their stories.
Dee, who is living with Alpha-1 Antitrypsin Deficiency, says people can support her by raising awareness about rare diseases.
Brent, who is living with primary immunodeficiency, says people can support him by donating plasma and just listening.
Patti, who is living with CIDP, says people can support her by understanding that patients are doing their best.
Melaine, who is living with primary immunodeficiency, says people can support her by understanding that everyone does not have the same immune system.
Roberta, who is living with von Willebrand Disease, says people can support her by learning about VWD, a bleeding disorder.