Hypereosinophilic Syndromes Patient Conference

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.

Your Input is Needed!

We strongly encourage you to participate in the live webcast so that you may contribute to the discussion. Comments will be summarized and submitted to the FDA and other stakeholders in effort to outline the unmet needs in hypereosinophilic syndromes. Patients and caregivers are invited to share perspective in response to a variety of questions we will ask during three discussion segments (a link to the full agenda appears at the bottom of this page) :

• Discussion Segment #1,  9:05am: Patient Perspectives on Impact of Disease on Daily Life
• Discussion Segment #2,  10:50am: Patient Perspectives on Current Therapies
• Discussion Segment #3,  1:20pm: Patient Perspectives on Ideal Treatments

During the event, our moderator will invite audience to share perspective and will provide instructions about how virtual attendees may “raise their hand” to be called upon to speak (we will unmute the phone line so that comments may be heard by all participants).

If you cannot join us onsite or for our webcast on March 23,  we still want to hear from you! You may share your perspective on the discussion topics using this form. We may choose passages to read aloud during the meeting on your behalf, and will incorporate your perspectives anonymously into post-meeting reports. Please complete this form: apfed.org/events/2018-hes-pc-2/

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 conference@apfed.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.

Connect with Conference Attendees

We recently formed a Facebook group for attendees to meet and connect with one another: https://www.facebook.com/groups/808875779299378/

Research Conducted Onsite and Via Telephone


Email conference@apfed.org.

Register | Schedule | Hotel | Travel grants | Panelist application | FAQs


All sessions will be held at the Hilton Washington DC/Rockville Hotel & Executive Meeting Center. Breakfast and lunch will be provided to onsite attendees. Below is a preliminary conference schedule. 

Friday, March 23, 2018

7:30 AM Registration, check-in, and continental breakfast
8:30 AMWelcome and opening remarks
Dr. Wendy Book APFED
8:35 AMPatient-centered therapies: The role of the patient in drug development
Dr. Calman Prussin Dr. Dawn Phillips
8:45 AMHypereosinophilic Syndromes, Then and Now: Perspective Piece
Dr. Gerald Gleich
9:05 AMIntroduction of panelists, panelist remarks

Open discussion with attendees: Patient Perspectives on Impact of Disease on Daily Life
Patient panel
10:35 AMBreak
10:50 AMPatient Perspectives on Current Therapies
Patient panel
12:00 PMCurrent Treatment Options and Side Effects (with Q&ADr. Paneez Khoury
12:20 PMLunch
1:20 PMPatient Perspectives on Ideal TreatmentsPatient panel
2:20 PMPediatric vs Adult HES + Q&A
Dr. Patricia Fulkerson
2:40 PMHES Research Update + Q&A
Dr. Amy Klion
3:05 PMConnecting with Resources and Support: For Patients and Providers Mary Jo Strobel, APFED
3:15 PMClosing RemarksDr. Wendy Book, APFED
3:20-4:00 PMPost-meeting refreshments served

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.

Register | Schedule | Hotel | Travel grants | Panelist application | FAQs


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.

To make a reservation in the room block you can book online or call (804) 822-7320 and mention APFED. 

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.

Register | Schedule | Hotel | Travel grants | Panelist application | FAQs


We have compiled answers to frequently asked questions about the HES Patient Conference to help you be informed and prepared for the conference.

On-site FAQs

Is there a dress code for attendees?
How can I prepare for attending the conference?
My child is under the age of 11. Can he/she attend sessions with me?
Is the conference only for patients, or are health care providers encouraged to attend?
I have dietary restrictions. Will I be able to eat at the conference?
Are there volunteer opportunities?
Is there financial assistance available to help defray costs of attending the conference?
What is the cancellation policy?

Virtual Webcast FAQs

Do I need to be logged in for the entire conference?
How may I ask questions of the speakers?
My computer does not have speakers. What can I do about audio?
Whom should I contact if I am having technical trouble with the webcast?

Below are a few suggestions to help optimize your virtual attendance

Internet: A wired internet connection is recommended
Browser: We suggest using Google Chrome if possible
Sound: Any device with a speaker will be sufficient
Flash: Version 10.3 and above

For additional technical requirements to view the webcast, please see https://helpx.adobe.com/adobe-connect/tech-specs.html.

Register | Schedule | Hotel | Travel grants | Panelist application | FAQs

Questions? Email conference@apfed.org.