Register for our conference!
DATES: March 30 – April 1st LOCATION: Portland, Oregon
VENUE: Embassy Suites by Hilton Portland Airport at 7900 NE 82nd Ave
Additional Information:
- Attendance is FREE
- Optional: For a fee you may reserve hotel rooms and order lunches.
- Be sure to check the box on the registration form allowing us to send you important email updates.
- We will invoice you for payment based on choices made during registration.
- If your children will be attending Kids Camp we will be sending an additional registration form via email. Kids Camp is free and offered to children 5-12 on a space available basis.
- Injection training will be offered throughout the conference. You MUST sign up to attend.
Why should I stay at the Conference Hotel?
- More time to network and have fun with attendees.
- More opportunities to meet our speakers and sponsors.
- Free breakfast provided by the hotel.
- Free evening reception with snacks and drinks provided by the hotel.
- No need to drive back and forth each day.
- A space to rest during the day – the schedule is very busy and packed with great sessions and break-out groups.
- Free airport shuttle to and from the airport and nearby Cascade Station which offers food and shopping.
- Convenience – If you arrive early or stay late there will be a place to store your luggage in one of our hospitality suites.
HOTEL RESERVATIONS ARE MADE THROUGH AIU OR CSRF.
Indicate your preference on the registration form. You’ll be invoiced by AIU or CSRF.
schedule: Subject to change
We have some wonderfully generous sponsors. Many have information to share including Adrenas and the CAH gene therapy trial and Alkindi Sprinkles with their small dose hydrocortisone. Be sure to visit their sponsor tables, sit with them at lunch, or attend their short session times TBD.
ABOUT THE SCHEDULE
*There are times when there is a slight difference in session times between concurrent sessions. This is to allow for time differences need by different presenters. Some sessions will be presented twice. Attendees may attend any session of choice.
Thursday
Registration opens at 8:30. Join others for informal meet and greets.
10:00 – 11:15
- IEP/504’s/Health Plans
- Working with Chronic Conditions
- Adrenas Clinical Trial Updates
- CSRF Special Session
- IEP/504’s/Health Plan Work Group
- Legislation and Advocacy with Danny’s Dose & Stand for Children
- Virtual Session on Glucocorticoid Induced Adrenal Insufficiency
- Living with AI: A patient’s perspective
2:00 – Joint Welcome for AIU and CSRF, housekeeping and game.
2:45 & 4:00
- Emotional Health in Children? (may flip times with Parents as anything)
- Management of Hypopituitarism
- Patient Centered Research
4:15 1 5:00 Break out Groups
- Behavior Tools to Optimize Sleep
- Parents ask anything (panel of AI adults? (may flip times with emotional health)
- CSRF: Building a Patient Registry and Other Opportunities to “Be the Change”
Friday
- Hang On: This is a BUSY DAY
9:30 – 10:45
- Part A: Hydrocortisone Therapy in Pediatric Adrenal Insufficiency…followed by Part B: Stress Dosing in children
- AI patient registry and long term study
- Strengthening Ourselves with Food and Movement AIU/CSRF
11:00 – 12:15
- Working with Chronic Conditions
- SSI & Disability Law
- Teens ask Anything of AI Adults
- CSRF: The Neuropsychology of Cushing’s: Insights into the Brain, Cognition, and Emotion
- Starting at 11:15 break outs for Parents. A:Children with Secondary B: Children with Primary AI
- Patient Centered Research sponsored by NADF
- Possible Session on Educational Law
- CSRF: A Historical Review and Recent Innovations in Surgical Methods for
Cushing’s,
Saturday
9:30 & 10:45
- Introduction to Gene Therapy
- Growth Hormone and Thyroid in Adults
- Transitioning to Adulthood
- CSRF: Glucocorticoid Withdrawal Syndrome:
11:00 – 12:15
- Introduction to Gene Therapy
- Crisis vs Pre-Crisis Discussion
- AI Registry & Study or Patient Centered Research (repeated session)
- CSRF: Highlights from the Recent Global Cushing’s Consensus Meeting:
*1:45 & 3:15 – Afternoon Session on Primary Adrenal Insufficiency in Adults
*1:45 – 4:30 Break out Sessions of 45 minutes each. There will 3 – 4 meeting at once. List includes break outs organized by both AIU and CSRF.
- Creating Community: Parents & Caregivers
- Creating Community: Affected Adults
- CAH with Richard Auchus
- Food & Movement
- Food & Movement for Athletes
- Stress dosing 101 for adults
- Digging deeper Thyroid/Growth Hormone
- Danny’s Dose
- A Deeper Dive into the Short-Term and Long-Term Cognitive Effects of Cushing’s
- Acclimating to a New Normal: Intimacy and Self Image
- Pharma Feedback: Rare Drug Development, Payer Issues, Your Qs Answered