Rare Disease Advocacy: Practical Strategies for Navigating Complex Care
ACTIVE
This webinar is designed for patient advocates who want to better support clients with rare or undiagnosed conditions, even if they have little prior experience in rare disease.
This webinar explores why diagnosis and care are often delayed or fragmented, how to find and evaluate credible disease-specific information and expertise, and how to work effectively when evidence, specialists, or clear care pathways may be limited.
Participants will also learn how to recognize common advocacy risks and use their existing skills in research, care coordination, and healthcare navigation to help rare disease clients move through complex systems.
Learning Objectives
- Explain the structural and clinical factors that contribute to delayed diagnosis and fragmented care for people with rare diseases.
- Identify and evaluate credible sources of rare disease information, including clinical, research, government, and patient-organization resources.
- Recognize common advocacy risks in rare disease cases and apply strategies for working effectively within the advocate’s scope of practice.
Practical strategies for guiding clients with rare or undiagnosed conditions through complex health care systems.
Non-Member Purchase
You will receive an email, after checking out, with a unique passcode to input above enabling this webinar.
Continuing Education webinars are open to NAHAC members and the general public looking to enhance their knowledge and receive continuing education credit.
As a NAHAC benefit, Full Members are charged only $10.00 for a CE webinar while the general public pays $40.00 per CE credit webinar. NAHAC full members, who just want to view the webinars, can go to the NAHAC website to view the webinars at any time – no charge.
To receive the discounted NAHAC membership rate for CE webinars, access and complete an application here: Membership Form.
Members Only Purchase
You will recieve an email, after checking out, with a unique passcode to input above enabling this webinar.
Continuing Education webinars are open to NAHAC members and the general public looking to enhance their knowledge and receive continuing education credit.
Victoria Killian, BCPA
Victoria Killian, BCPA, is a Board Certified Patient Advocate and founder of Chronically Advocating, an independent patient advocacy practice located in Los Angeles specializing in complex chronic illness, rare disease, care coordination, and healthcare navigation.
She serves on the Board of Directors of G-PACT and has held advocacy roles with the Spondylitis Association of America, U.S. Pain Foundation, and Arthritis Foundation.
A rare disease patient herself, Victoria brings both professional expertise and lived experience navigating delayed diagnoses, fragmented specialty care, and complex health systems. Her work focuses on helping patients and advocates find appropriate expertise, evaluate information, and navigate complex care more effectively.