Information about new resources for families, specifically caregivers

The website at is a guide for family caregivers of loved ones with rare diseases and addresses their distinct needs.  The resources available include:

·         Products, services, and technology tailored to the rare disease caregiver

·         Educational information for rare disease caregivers of children with special needs

·         Interactive forum to post comments, pose questions, provide peer support, and share experiences as rare disease caregivers

·         Videos on rare disease caregiving best practices

·         Globally relevant content 

·         Resources for rare disease caregivers by country

·         Blog from the perspectives of rare disease caregivers

·         Links to rare disease-specific organizations

·         Information on palliative and hospice care

·         Information on bereavement

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