Our mission is to empower, educate, and assist people in the rare disease community by addressing social barriers affecting their ability to be compliant, and to improve their quality of life.
WHERE WE’RE HEADED
• Direct Services- We offer support to patients with a rare disease, their caregivers, and their loved ones
• Community Programs- We develop community programs that address day-to-day barriers of patients with a rare disease and their loved ones
• System Change- We partner with institutions and policymakers to change the future for the those in rare disease communities.