Sales Ended

2018 Family Conference on H-ABC and TUBB4A-related Leukodystrophies

Event Information

Share this event

Date and Time

Location

Location

Buerger Center for Advanced Pediatric Care

Children's Hospital of Philadelphia

3500 Civic Center Boulevard

Philadelphia, PA 19104

View Map

Event description

Description

Family Conference Live Stream

Can't join us in Philadelphia? No worries! We have hired a professional production company to live stream the conference lecture series, and we will upload recordings of each presentation to the same link in the weeks following the conference.

The video feed will go live at 9:00AM EST Saturday, October 27 and will be available via Global Leukodystrophy Initiative (GLIA) website at the link below.

http://theglia.org/2018habcmeeting/

You may click here to download a PDF of the full conference agenda.




On Saturday, Oct. 27, 2018, patients and families affected by H-ABC and other TUBB4A-related leukodystrophies are invited to the first ever family conference hosted by the Leukodystrophy Center at Children's Hospital of Philadelphia.

The conference, hosted in collaboration with the Global Leukodystrophy Initiative (GLIA), will feature a lecture series hosted by some of the world's leading clinical and scientific experts in leukodystrophies. Presentations will cover research progress in TUBB4A-related leukodystrophies and explore the development of future clinical trials and therapies.

The goal of this event is to bring together patient families and researchers in an environment where information and ideas can be exchanged freely. The event will culminate with a networking opportunity for families, including a catered lunch, games, and fun-filled activities for kids and adults alike!

During the three days prior to the conference, patients and families will have the opportunity to participate in research assessments and meet with members of our multidisciplinary clinical team, including Dr. Adeline Vanderver. Patients will also be invited to participate in various functional assessments geared toward collecting data for our natural history research.

Travel

While all guests are responsible for arranging their own travel to/from Philadelphia, our team is available to make recommendations and help you identify financial assistance options. Please contact Julia Kramer-Golinkoff for more information on this.

Parking

Guest parking is available at the Buerger Center for Advanced Pediatric Care. The Leukodystrophy Center will cover all parking costs. Passes can be obtained at the event.

Meals

The Calliope Joy Foundation has generously offered to provide a continental breakfast and catered lunch for conference attendees on Saturday, October 27.

Contact information

Please note that the online registration portal is now closed. If you are interested in attending the conference on October 27, please contact Julia Kramer-Golinkoff at kramergolj@email.chop.edu for more information. We look forward to welcoming you to the Leukodystrophy Center at the Children’s Hospital of Philadelphia.

Date and Time

Location

Buerger Center for Advanced Pediatric Care

Children's Hospital of Philadelphia

3500 Civic Center Boulevard

Philadelphia, PA 19104

View Map

Save This Event

Event Saved