Accelerating Discovery and Driving Hope for 4H Leukodystrophy

October 13-14, 2023

Children’s Hospital of Philadelphia

Live Stream of Conference is Available Here Beginning Saturday, October 14th at 3:00 PM GMT/9:00 AM ET.


Please note that in-person registration has closed for this event. If you are interested in attending virtually, please reach out to Shannon@yayafoundation4hl.org.

Please join us

The Yaya Foundation 4H Leukodystrophy (4HL) is proud to announce its upcoming Yaya Foundation Family & Scientific Conference, October 13-14, 2023 in Philadelphia.

Core components of this conference will include research and scientific updates; care, support management and resources for families; and an opportunity to bring our family, clinician, researchers, and partners together to enhance our community.

The benefits of attending this free hybrid conference include:

  • Receiving expert care guidance from clinicians who have cared for patients with 4HL
  • Access resources that will have a positive impact on day-to-day life
  • The ability to participate in Q&A with the clinicians
  • Multiple opportunities to connect with other families

We look forward to bringing individuals and families affected by 4H together with leading specialty clinicians.




Dates and times for clinical and research visits will be determined by CHOP but will occur in the days leading up to the conference.

Friday, October 13

12:00 PM – 5:00 PM: Arrival and Check-In

1:00 PM – 3:00 PM:

  • Research Roundtable (Researchers only; Agenda TBD) 

4:30 PM – 6:30 PM: Welcome Reception

Saturday, October 14

7:00 AM – 9:00 AM: Registration and Breakfast (At CHOP)
9:00 AM – 9:20 AM:
  • Welcome by Ben
  • Remarks by Ron

9:20 AM – 10:00 AM: Keynote Presenter

9:30 AM – 12:00 AM: Science and Research Updates

12:00 PM – 1:00 PM Q&A

1PM – 2:00PM LUNCH

2:00 – 2:45 PM: ARC of Philadelphia 

2:45 – 3:45 PM: Nationwide Children’s 

3:45 – 4:00 PM: Yaya Foundation Looking Ahead & Closing Remarks 

4:00 – 5:30 PM: Refreshments and Courtyard Chats 




Children's Hospital of Philadelphia

Children's Hospital of Philadelphia (CHOP) is the nation's first hospital devoted exclusively to the care of children. Since our start in 1855, CHOP has been the birthplace for countless breakthroughs and dramatic firsts in pediatric medicine. .

Hotel -- The Study at University City

Inspired by the architecture of Philadelphia and the skills of local craftspeople, Study Hotels is pleased to offer its second property in the heart of vibrant University City. The Study at University City sets new expectations for comfort and service. Our hotel near Drexel University and UPenn brings energy to the neighborhood as a unique destination where visitors, culture seekers, professors, students, families and locals intersect to enjoy approachable hospitality and a comfortable space to relax and renew. Our team is passionately dedicated to providing warm, attentive and intuitive service, addressing each visitor's individual needs with knowledge and inspiration that will enhance and personalize the guest experience.


Yaya Foundation is working closely with our conference and hospitality partners to help ensure the event is accessible for our 4HL community. Please let us know if you have any specific requirements so that we can best assist you during the event.