Resources for Patients and Families

ARDVARC PAGs

ARDVARC works with disease specific advocacy organizations.

RDCRN Resources for Patients and Families

The Rare Diseases Clinical Research Network (RDCRN) provides numerous resources for patients and families.

VAccess

Through VAccess, patients and families can find educational resources to better understand vascular anomalies or find expert care, while clinicians can explore clinical resources or submit direct inquiries to our network of VA specialists. Click below to access the information and tools made for you.

Patient Advocate Foundation (PAF)

We provide patient services, eliminating obstacles in access to quality healthcare.

EveryLife Foundation

The EveryLife Foundation for Rare Diseases is powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community.

GoodRx

Our mission is to build better ways for people to find the right care at the best price. Our technology gives all Americans — regardless of income or insurance status — the knowledge, choice, and care they need to stay healthy.

HealthCare.gov

Visit HealthCare.gov to learn about your options to get health insurance coverage, check if you qualify for savings, and compare plans.

Rights of Students with Disabilities

A resource to for the rights of students with disabilities. Find information on the IDEA, Section 504, and the ADA.

ClinicalTrials.gov

ClinicalTrials.gov is a place to learn about clinical studies from around the world.