March 23, 2018 | 8:30 AM-3:30 PM
Hilton Washington DC/Rockville Hotel & Executive Meeting Center
1750 Rockville Pike, Rockville MD 20852
APFED’s Hypereosinophilic Syndromes Patient Conference offers a unique opportunity to learn about treatments and research advances for hypereosinophilic syndromes (HES), and to share perspectives with the FDA and other key stakeholders about the impact of HES on patients and families, as well as how patients view current treatment approaches. Dynamic sessions and question and answer opportunities will allow you to learn and share knowledge and are designed to leave you inspired and empowered.
Apply to be a panelist
Patients are invited to participate in the discussion. If you are interested in serving as a volunteer panelist to help kick off the discussion, please indicate so during the registration process and complete this application. Applications must be complete by January 19. It is preferred panelists be in physical attendance at the meeting, however, phone-in panelists will also be considered. Panelists will be confirmed prior to the meeting.
Apply for a travel grant
Thanks to the generous support of Knopp Biosciences, APFED will award 10 travel grants on a first-come, first serve basis to eligible applicants. The award may be applied to travel expenses (e.g., hotel, transportation, mileage, meal, and/or childcare costs) up to $500. Recipients will also have the nominal registration fee waived. Please review the qualifications and requirements for the travel grants and complete the travel grant application form.
If you are a patient and would like to participate onsite, but the registration fee is problematic, please email firstname.lastname@example.org stating your need. For a list of travel assistance programs, see apfed.org/resources/for-caregivers/traveling/.
Can’t make it in person?
Register to attend the conference virtually to watch the sessions via web-stream and participate in Q&A and patient perspective discussion.
All sessions will be held at the Hilton Washington DC/Rockville Hotel & Executive Meeting Center. Breakfast and lunch will be provided to onsite attendees.
Friday, March 23, 2018
|7:30 AM||Registration, check-in, and continental breakfast|
|8:40 AM||Patient-centered therapies: The role of the patient in drug development
|8:50 AM||HES 101
|9:15 AM||Patient perspectives on the impact of HES on daily life
Discussion topics: Are there specific activities that are important to you but that you cannot do at all or as fully because of HES? How has your condition changed over time? What worries you most about your condition?
|10:30 AM||Current treatment options and side effects
|11:00 AM||Patient perspectives on current therapies
Discussion topics: What treatments are you currently using? How well do you feel it controls your symptoms? Would you define your condition today as being well-managed? What concerns, if any, do you have about your current treatments? What are the most significant downsides to your current treatments? Do your treatments impact daily life? If so, how?
|1:00 PM||Patient perspectives on ideal treatments
Discussion topics: What factors do you take into account when making decisions about selecting a course of treatment? Assuming there is no complete cure for your condition, what specific things would you look for in an ideal treatment for your condition? What would you consider to be a meaningful improvement in your condition that a treatment could provide?
|2:00 PM||Pediatric vs adult HES
|2:20 PM||HES research update
|3:00 PM||Coping with chronic disease|
|3:20 PM||Connecting with resources and support
All information presented at this conference is for the sole use of the attendees. Permission for the use of this information and all associated materials must be obtained from the individual speakers. Information presented here is the opinion of the speakers; any questions that arise as a result of this conference regarding patient care should be directed to your consulting physician. Agenda and speakers are subject to change.
The conference will take place at the Hilton Washington DC/Rockville Hotel & Executive Meeting Center, 1750 Rockville Pike, Rockville MD 20852.
For your convenience, we have reserved a room block at the Hilton at a discounted rate of $179 per night (plus tax). The discounted rate is available for Thursday, March 23 and Friday, March 24. The special rate is available until March 1, or until the room block is filled.
Traveling to the hotel
The hotel is conveniently located across from Twinbrook Metro Station on DC’s Red Line and within an hour of both Dulles International Airport and Reagan National Airport.
Parking is available at the hotel for conference participants at no cost. Overnight parking is $15/night.
We have compiled answers to frequently asked questions about the HES Patient Conference to help you be informed and prepared for the conference.