WHO WE ARE
The United Leukodystrophy Foundation (ULF), incorporated in 1982, is a non-profit, voluntary health organization dedicated to funding cutting-edge research and to providing patients and their families with disease information and medical referrals. The Foundation is located in DeKalb, Illinois.
OUR MISSION is to provide support to the leukodystrophy community and enable platforms to accelerate improving patient quality of life and finding cures.
OUR VISION is to meet the needs of patients and families, whether newly diagnosed or living with a leukodystrophy. Through unified collaboration with advocacy groups, medical and research professionals, and pharma/biotech companies, we provide support, networking, and education to help navigate the journey of the disease.
Thank you !
Patient Groups Begin Using RARE-X’s Transformative Data Collection Platform - RARE-X
rare-x.org
RARE-X is a collaborative platform for global data sharing and analysis to accelerate treatments for rare disease.
❤ Global Leukodystrophy Initiative
Congratulations Dr Renaud!
Congratulations Deb!!
Congratulations for your well deserved award!
Congratulations Dr Renaud!
Yay! Well deserved!
Congratulations Dr Renaud!
TOTALLY AWESOME!!!! CONGRATULATIONS DR. RENAUD!!!!
CHOP Leukodystrophy Center Online Referral Survey
redcap.chop.edu
Thank you for your interest in the clinical and/or research opportunities available through the Leukodystrophy Center at Children's Hospital of Philadelphia.
Consider volunteering…email : office@ulf.org
Come join us! 🙌
Morgan Elizabeth
Thank you!
Orchard Therapeutics Announces Regulatory and Clinical Updates for Lead Gene Therapy Programs
www.globenewswire.com
Expected clinical package for OTL-200 BLA for MLD using data from existing patients clarified with FDA Guidance obtained on design of OTL-203 global...
www.collins.senate.gov
The bill would curtail the “diagnostic odyssey” children with rare diseases endure, which lasts 5-7 years on average In: Press Releases Posted Thu, 06/24/2021 - 09:04 Share: Washington, D.C.—U....WHAT WE DO
01.
Every year, the ULF puts a call out to the leukodystrophy medical community asking for research proposals that need funding. Thanks to generous donations, the ULF has been able to grant over $450,000 for medical research since 2010.
02.
The ULF works to establish a communication network among families; as well as increase public awareness and acts as an information source for health care providers by promoting and supporting research into causes, treatments and prevention of the leukodystrophies.
03.
Whether you are connected by blood, friendship, faith or diagnosis; having the unwavering support of your family can help you keep going when things get tough. The ULF has supported families facing the devastating diagnosis of leukodystrophy for over 35 years. We are proud to be a part of your family’s support network.
04.
The Scientific Symposium and Family Conference has been a Foundation staple by providing a venue for families and medical professionals to come together. The 2019 Annual Conference welcomed the largest attendance of families and medical professionals yet.
05.
Need help finding a doctor who specializes in leukodystrophy in your area? Contact the ULF by phone, email or social media. We are happy to assist!
06.
A key piece to fundraising success is marketing. The ULF is happy to help you strategize to make the most of your event whether you are holding a spaghetti supper, 5K run/walk event or a bake sale.
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DONATE
Support medical research and programming!
For the past 35 years, the United Leukodystrophy Foundation has provided hope to families who face the devastating diagnosis of leukodystrophy. Over our history, the ULF has been a resource for information, medical referrals, research grants, programming and a support network to remind affected individuals that they are not alone in this fight.
Please consider showing your support today!