LBSL Conferences
Cure LBSL has been co-hosting a biannual LBSL conference with The Moser Center for Leukodystrophies at the Kennedy Krieger Institute since 2018. Our team also regularly participates in conferences hosted by related organizations.
Please see below for conferences of interest to the LBSL community. We hope to see you there!
LBSL Conferences
LBSL International Conference
When: July 26 - 28, 2024; Optional Clinic Visits July 26 and July 29
Where: Kennedy Krieger Institute / Johns Hopkins Medicine, Baltimore, Maryland (USA)
Scholarships: Travel stipends may be available. Contact info@curelbsl.org for more information.
Lodging: Residence Inn by Marriot Baltimore Johns Hopkins Medical Campus (group rate code will be available closer to event)
Links to Past LBSL Conferences:
LBSL Mini Conference (Half-Day Breakout Meeting during ULF Family Conference)
Half-Day Breakout Meeting during ULF Family Conference
Cure LBSL hosted a mini conference during the ULF Family Conference. When: Friday June 23 - Saturday, June 24, 2023
Where: Eaglewood Resort and Spa - Itasca, Illinois, USA (near Chicago O'Hare airport)
Conference website: https://ulf.org/news/conference
Family Conference
Agenda: CLICK HERE
Recordings: CLICK HERE
LBSL Mini Conference
Agenda – CLICK HERE
Recordings: CLICK HERE
Clinical updates with Dr. Amena Smith Fine (coming soon)
Scientific/research updates with Dr. Christina Nemeth Mertz
Patient engagement updates with Melody Kisor
Patient and Family Conferences
NORD Living Rare, Living Stronger Patient and Family Forum
When: Spring, 2024 (exact dates to be announced)
Where: Washington, DC (USA)
Registration: CLICK HERE
United Leukodystrophy Foundation Family Conference
United Leukodystrophy Foundation Family Conference
When: June 28 and 29, 2024
Where: Itasca (near Chicago), Illinois (USA)
Registration: CLICK HERE
Hunter’s Hope Family Symposium
When: July 17 – 21, 2024
Where: Ellicottville, New York
More Information: CLICK HERE
Professional Conferences
Mitochondrial ARS (Mt-aaRS) Genes Scientific Symposium 2024
When: Early 2024 (dates to be determined)
Where: Virtual
Registration: CLICK HERE
United Leukodystrophy Foundation Scientific Symposium
When: June 27, 2024
Where: Itasca (near Chicago), Illinois (USA)
Registration: CLICK HERE
Hunter’s Hope Medical Symposium
When: July 15 – 17, 2024
Where: Ellicottville, New York
More Information: CLICK HERE
Past Conferences
NORD Breakthrough Summit
When: October 15 – 17, 2023
Where: Washington, DC
More Informationn: CLICK HERE
Cure LBSL Poster accepted for presentation at this event!
n-Lorem Nano-rare Patient Colloquium- Hosted by Biogen
When: October 12 , 2023
Where: Cambridge, MA
Recordings: CLICK HERE
PCORI – Patient Centered Outcomes Research Institute
When: October 4 – 5, 2023
Where: Washington, DC
More Information: CLICK HERE
Chan Zuckerberg Initiative – Science in Society 2023 Meeting
When: September 21 – 23, 2023
Where: Newport Beach, California
More Information: Invitation Only Event
Cure LBSL Poster accepted for presentation at this event!
Global Genes RARE Advocacy Summit
When: September 19 – 20, 2023
Where: San Diego, California
More Information: CLICK HERE
Cure LBSL Poster accepted for presentation at this event!
C-Path Rare and Orphan Disease Conference
When: September 11-13, 2023
Where: Washington, DC
More Information: CLICK HERE
United Leukodystrophy Foundation Family Conference
When: June 23 and 24, 2023
Where: Chicago, Illinois (USA)
More Information: CLICK HERE
United Leukodystrophy Foundation Scientific Symposium
When: June 22, 2023
Where: Chicago, Illinois (USA)
More Information: CLICK HERE
NORD Living Rare, Living Stronger Patient and Family Forum
When: May 6, 2023
Where: Washington, DC (USA)
More Information: CLICK HERE
Mitochondrial ARS (Mt-aaRS) Genes Scientific Symposium 2023
When: February 10, 2023 10:00am – 6:00pm ET
Where: Virtual (no cost)
More Information: CLICK HERE
Global Leukodystrophy Initiative Advocacy Workshop and Scientific Meeting
When: October 9 - 11, 2022
Where: Philadelphia, Pennsylvania (USA)
Conference Details: CLICK HERE
Recording of LBSL/HBSL Workgroup Presentation: CLICK HERE
NORD Rare Diseases and Orphan Products Breakthrough Summit
When: October 16 and 17, 2022
Where: Washington, DC (USA)
Recap: CLICK HERE