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

CSRF is excited to host our 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.

Because we will be creating a detailed White Paper to be widely distributed throughout the medical community, it was imperative to carefully define the qualified attendees for this meeting. In a perfect world we would have the financial and time resources to hold multiple meetings in different locations annually – we’re working on it! But because this meeting is intended as “way beyond the 101”, we are limiting participation to ONE patient with a CONFIRMED ENDOGENOUS Cushing’s diagnosis (not exogenous, caused by steroid use, etc.) and up to ONE true Caregiver – a person who takes part in some aspect(s) of care for the patient. This could be a spouse, child, good friend….anyone who has taken the time and given their energy to help the patient. This is important because there will be a separate session for the Caregivers in attendance, and we will need their input to design resources intended to help other Caregivers and give a snapshot of the state of those who help patients through the difficult Cushing’s journey. Our intention is for this to be a very interactive conference with substantial participation from attendees to help guide the discussions.

Please read the Prospectus before registering for the conference. A link to the registration is at the bottom of this page.

After you have read the Prospectus and information on this page and determined that traveling last minute to Atlanta the weekend of October 4-6, 2019 works for your schedule, please click the link below to register for the conference. You will receive a confirmation within 24 hours but you may e-mail [email protected] at any time with questions. As of September 25, 2019 there were only a few spots left after some last minute cancellations, so there is a chance you will be placed on a wait list. Please do not book any nonrefundable travel or lodging until you receive confirmation of your registration.

REGISTER HERE

After you register, click hereto choose your breakout sessions.

Agenda

Friday, October 4, 2019

12:30 – 2:00 pm                   Registration, Refreshments, Networking

2:00 – 2:15 pm                     Welcome, Day One

2:15 – 3:30 pm                     Defining the New Normal; What to Expect After Surgery

3:45 – 4:45 pm                     NIH Programs and a Patient Perspective on the NIH Process

5:00 – 6:00 pm                     Centers of Excellence and What to Do When I Don’t Have One, Q&A, Day One Wrap Up, Sponsor Recognition

6:00 pm                                 Pay-Your-Way Group Dinner Options

Saturday, October 5, 2019

8:30 – 9:20 am                     Breakfast and Networking

9:20 – 9:30 am                     Welcome, Day Two

9:30 – 10:30 am                   Physical and Chemical Changes of the Brain and Heart in Cushing’s

10:30 – 11:30 am                 Neuropsychological Changes – Temporary and Permanent

11:45 – 1:00 pm                   Quality of Life After Cushing’s and Realistic Long Term Expectations

1:00 – 2:00 pm                     Lunch, with Three Optional Roundtable Topics (choose on-site)

-Observations from a Neuroendocrine Physician’s Assistant

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

-Making a Drug for a Rare Community

2:00 – 3:00 pm                     Medical Therapies Panel

3:15 – 3:45 pm                     Origin Stories for Three Medical Therapies       

4:00 – 5:00 pm                     Breakout Session One:

Caregivers  

Progress Out of Europe and Around the Globe

Adrenal Insufficiency: Sick Day Management and Injection Demo

Processing Grief and Practicing Self-Care

5:00 – 6:00 pm                     Breakout Session Two:

Adrenal Insufficiency

Cushing’s Appetite and How Diet Affects Mood and Cognition

Optimizing Your New Hormone Replacement Regimen

What to Expect After Recurrence or Failed Surgery

6:00 – 6:30 pm                     Conference Wrap Up, Questionnaire

6:30 – 10:00 pm                   Dinner Social in Wisteria Lanes (onsite private bowling w/ catering)

MAIN CONFERENCE IS FINISHED.  SUNDAY IS ONLY FOR OPTIONAL NETWORKING OPPORTUNITIES AND PRE-SET PATIENT VIDEO RECORDING.

Sunday, October 6, 2019

Patient Video Project        Pre-arranged ahead of conference, will be posted on the csrf.net website and social media by mid-November.

Optional Networking         Do youwant to talk to CSRF about anything?  Let us know ahead of the meeting and we will schedule some time on Sunday.