Print Friendly

Cushing’s Patient Journey Summit 2019: Defining The “New Normal”

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.

We will be creating a detailed White Paper to be widely distributed throughout the medical community that will be based on results from a survey we will send to membership in the coming weeks. This survey was created using a pre-questionnaire and feedback from conference attendees. Keep your eye on your e-mail inbox for that official survey sometime in December. Your participation helps us give a more accurate picture to those we most want to educate and support!

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). In December we will share some very special patient journey videos we were grateful to capture the day after the conference.

MEETING FACULTY BIOSKETCHES

Defining the New Normal: What to Expect After Surgery

Slides

Video

NIH Programs and a Patient Perspective on the NIH Process

Slides

Video

Centers of Excellence and What To Do If I Don’t Have One

Handout

Slides

Video

Physical and Chemical Changes of the Brain and Heart in Cushing’s

Slides – coming soon!

Video

Neuropsychological Changes – Temporary and Permanent

Slides

Video

Quality of Life After Cushing’s and Realistic Long Term Expectations

Handout 1

Handout 2

Slide

Video

Becoming an Advocate, How to Connect with the FDA and Others Who Influence Policy

Handout

Making a Drug for a Rare Community

Handout

Medical Therapies Panel

Handout 1

Handout 2

Handout 3

Slides 1 of 2

Slides 2 of 2

Video

Caregivers

Handout 1

Handout 2

Progress Out of Europe and Around the Globe

Handout

Adrenal Insufficiency: Sick Day Management and Injection Demo

Handout – coming soon!

Processing Grief and Practicing Self-Care

Slides

Adrenal Insufficiency: Beyond the 101

Handout – coming soon!

Slides

Optimizing Your New Hormone Replacement Regimen

Slides

Handout