Caregiving Right Now!
As a family caregiver of a loved one with a rare disease, you can feel overwhelmed and hardly know where to start. That’s not surprising. Caregivers in the rare disease community face some exceptional hurdles. Rare disease caregivers often face a higher burden of very intense caregiving activities. You may even have faced the special challenge of having to be the one to educate your medical providers and others about the rare disease itself. So you need information, education, and tools that can help you manage the many daunting tasks you face!