Live Panel Session
Live Panel Discussion: “Where Do We Go From Here?”
In this live panel discussion, participants will hear from three people who have navigated diagnosis of rare disease and work to help people with rare disease live better. The panel will focus on how rare disease affects the whole person, family and community. We will discuss family systems and specific strategies to help families advocate when the patient is a child.
Learning Objectives:
- When and how to advocate for a second opinion
- Language to help patients speak more confidently about their own bodies when working with doctors
- Strategies to help patients when they are doing the normal (standard) treatment protocols but the treatment is not working.
About The Presenters:
Nate Milam II
Founder & CEO, Stripes of Solidarity | Rare Disease Advocate
Organization: Stripes of Solidarity (SOS)
Nathanael (Nate) Milam II (he/him) is a passionate rare disease advocate, storyteller, and changemaker dedicated to advancing health equity and representation for historically marginalized communities. Misdiagnosed with Crohn’s disease at age seven and later correctly diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), Nate endured sepsis, multiple rounds of chemotherapy, and a lifesaving bone marrow transplant. He has since transformed his lived experience into a platform for systemic change.
Nate is the Founder and CEO of Stripes of Solidarity (SOS), an intersectional advocacy platform that amplifies underrepresented voices through storytelling, education, and action. Through SOS, he leads campaigns and initiatives such as the Rare & Real podcast, which fosters open dialogue around rare disease, queerness, and authentic patient experiences.
His leadership extends nationally as an Ambassador and Patient Advisory Board Co-Chair for the Histiocytosis Association, and as a member of the Rare Disease Diversity Coalition, where he works to dismantle systemic barriers in research, care, and policy. With resilience, creativity, and policy insight, Nate is redefining advocacy and building communities where every patient’s story matters.
Kaitlin Patton, PhD
Evolvinn Therapy and Consulting
Clinical Psychologist & Clinical Director
Over the past decade, Dr. Patton has enjoyed collaborating with patients across the life span and she has a particular interest in working with individuals who are dealing with chronic health conditions. Her approach is centered around Cognitive and Behavioral Therapy (CBT) and Acceptance and Commitment Therapy (ACT) while drawing on her extensive experience in a wide range of evidence-based practices, including solution-focused therapy and motivational interviewing.
Dr. Patton received her Bachelor of Science degree in Psychology from Biola University and earned her Master’s degree in Psychological Science and Doctorate degree in Clinical Psychology from Seattle Pacific University. She completed a predoctoral internship at Southwest Consortium, a partnership of the U.S. Department of Veterans Affairs, the University of New Mexico, and the Indian Health Service, and her postdoctoral fellowship at the Veterans Affairs Hospital in Albuquerque, New Mexico. She has had the privilege of working with individuals in embedded behavioral health, residential, inpatient, and outpatient settings, including her own practice, and via telehealth sessions for the past six years.
As Evolvinn’s Clinical Director, Dr. Patton applies her skill in and passion for sizing up individuals’ complex challenges and crafting innovative, practical, empowering solutions. Dr. Patton is licensed in Virginia, California and Washington State and holds a telehealth license in Florida and Vermont.
Victoria Killian, Independant Patient Advocate
Chronically Advocating
Victoria Killian is a Board Certified Patient Advocate (BCPA) and rare disease advocate who transformed her own long diagnostic journey into a mission to help others. Living with ankylosing spondylitis, gastroparesis, narcolepsy, bronchiolitis, primary immunodeficiency, long COVID, and a rare elastin gene mutation, she understands the barriers patients face in a complex healthcare system. She serves on national and state advocacy committees, is a board member of G-PACT, and co-leads the Gastroparesis Support Group. Her work centers on health equity, lowering costs, and improving outcomes for patients with chronic illness and rare disease.