Hypereosinophilic Syndromes Patient Conference

APFED’s Hypereosinophilic Syndromes Patient Education and Drug Development Conference was held March 23, 2018, in Rockville, MD. It offered 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 HES has had on on people with HES and their families, as well as learn about their views on current treatment approaches. Dynamic sessions and question and answer opportunities allowed all those who participated in-person and by live webcast to learn and share knowledge.

Thank you to our education partner Knopp Biosciences for supporting the conference.

 

Conference Materials

Please note: The YouTube playlist does not include Dr. Klion’s presentation. We will update the playlist to include this presentation as soon as the research that was discussed is published and we are able to show the material. Please also note that polling questions and call-in instructions that are included in the webcast were only operational during the live event are no longer accessible.

 

Conference Transcripts

Click below to read transcripts from the patient panel discussions at the conference:

Patient Perspectives on Impact of Disease on Daily Life

Patient Perspectives on Current Therapies

Patient Perspectives on Ideal Treatments

 
 

Conference Videos

If you were unable to attend the conference in person or online, you can view the recordings of the conference sessions below, and on AFPED’s YouTube channel.

Conference Opening and Welcome Remarks

Dr. Wendy Book
APFED President

 

Patient-Centered Therapies: The Role of the Patient in Drug Development (Part 1)

Dr. Calman Prussin
Knopp Biosciences

 

Patient-Centered Therapies: The Role of the Patient in Drug Development (Part 2)

Dr. Dawn Phillips
Evidera

 

Hypereosinophilic Syndromes, Then and Now: Perspective Piece

Dr. Gerald Gleich
University of Utah

 

Patient Perspectives on Impact of Disease on Daily Life

Patient Panel

 

Patient Perspectives on Current Therapies

Patient Panel

 

Current Treatment Options and Side Effects

Dr. Paneez Khoury
National Institutes of Health

 

Patient Perspectives on Ideal Treatments

Patient Panel

 

Pediatric vs Adult HES

Dr. Patricia Fulkerson
Cincinnati Children’s Hospital Medical Center

 

Connecting with Resources and Support: For Patients and Providers

Mary Jo Strobel
APFED Executive Director

 

Your Input is Still Needed

Comments from the discussion at the conference will be summarized and submitted to the FDA and other stakeholders in an effort to outline the unmet needs in hypereosinophilic syndromes. If you are a patient or caregiver who did not 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 from your responses to incorporate anonymously into post-meeting reports.

 

Research Participants Needed

Questions? Email conference@apfed.org.