How Do Patients Want to Be Supported?

In honor of Rare Disease Day, we share the voices of patients and caregivers on how others can support them as they manage complex medical conditions.

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Rare Disease Day Patient Focus
Stacy, a primary immunodeficiency (PI) patient, feels support when people in her life take a moment to talk with her about the impact of PI on her life.
We asked: How would you like to receive support from the people in your life and from your communities?
Rick, a hemophilia patient, says the community feels supported by programs that help them overcome perceived limitations.
Lisa, a caregiver for someone who has hereditary angioedema (HAE), says she feels supported when people spread awareness about the condition.
Dee, an Alpha-1 Antitrypsin Deficiency patient feels supported when people spread awareness and support advocacy organizations.
Arthur, a CIDP patient, feels supported when people accept his physical limits.
Kristin, a von Willebrand Disease patient, feels supported when people adjust their expectations and accept that her treatment involves infusions and needles.
Melaine, a primary immunodeficiency patient, feels supported when people understand that everyone doesn't have the same immune system and that her diagnosis took decades.
Jayne, a patient with ANCA-Associated Vasculitis, says patients feel supported when medical professionals take them seriously.