CSRF hosted the 2019 Patient Journey Summit: Defining the “New Normal” the weekend of October 4-6, 2019 at Emory Conference Center Hotel in Atlanta, GA. A patient-led steering committee worked on topics throughout the Spring to build our agenda.
Here is the original Agenda for the conference.
We are pleased to share the slides from most of the main sessions, which were also recorded. You can find links for handouts, slides, and videos below (where available).
At the end of the conference we recorded several very personal and impactful patient stories. You can view those by clicking here.
Defining the New Normal: What to Expect After Surgery
NIH Programs and a Patient Perspective on the NIH Process
Centers of Excellence and What To Do If I Don’t Have One
Physical and Chemical Changes of the Brain and Heart in Cushing’s
Neuropsychological Changes – Temporary and Permanent
Quality of Life After Cushing’s and Realistic Long Term Expectations
Becoming an Advocate, How to Connect with the FDA and Others Who Influence Policy
Making a Drug for a Rare Community
Medical Therapies Panel
Caregivers
Progress Out of Europe and Around the Globe
Adrenal Insufficiency: Sick Day Management and Injection Demo
Handout – coming soon!
Processing Grief and Practicing Self-Care
Adrenal Insufficiency: Beyond the 101
Handout – coming soon!
Optimizing Your New Hormone Replacement Regimen
Presenting Sponsor 
Platinum Sponsor