Honoring Olivia 2020

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The Premier Family Resource for Metachromatic Leukodystrophy Information & Support since 1999!

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Where The MLD Family™ Gathers

2023 MLD Family Conference™

July 14-15 in Knoxville, TN.

We are looking forward to getting back together in person (and virtually) this summer!

Our 24th year of hosting the world’s only MLD-focused conference. Meet other families, leading MLD clinicians and researchers, and other rare disease experts.

Join us as we learn about how to provide your MLD loved one (and you) the best quality of life possible, emerging therapies, MLD newborn screening, how to impact policy including gene therapy reimbursement, and the FDA/regulatory approvals.

Families are encouraged to bring their MLD loved ones and other children to the conference! Those with MLD angels are especially welcomed – we will host our traditional MLD Family Butterfly Release in honor and memory of all the angels since 2019 when we last met in person.

Registration and scholarship information will be available in April.

Enter your contact information below to be among the first to learn the details…

I want to be first to know! Please keep me posted about the upcoming MLD Family Conference™

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Donation Total: $30.00 for 12

Cincinnati Children’s Hospital Medical Center
Cincinnati, Ohio, United States, 45229
Principal Investigator: Loren Pena, MD
Phone: +1 513-636-7297
email: Loren.Pena@cchmc.org

While not necessary, we’d encourage you to contact us (click to email or call +1 503-656-4808) before you reach out to the PI. We can often help you assess your loved one’s eligibility and personally know many of the PI’s so we can help to expedite the process of connecting your doctor to the PI.

Ann & Robert H. Lurie Children’s Hospital of Chicago
Chicago, Illinois, United States, 60611
Principal Investigator: Barbara Burton, MD
Phone: +1 312-227-6120
email: bburton@luriechildrens.org