Where Families Impacted by Krabbe disease Can Connect, Share, and Learn KrabbeConnect will be hosting thier first in-person #curekrabbe Family Conference in Tampa Florida Location: Westin Tampa Waterside, 725 South Harbour Island Boulevard What you can expect from the conference: This family conference will feature scientific, advocacy, and family support sessions. The Family Conference will …
We look forward to having you join us! Join us as we connect with other caregivers to discuss ways on coping with common stressors that caregivers face on a regular basis. This is a safe, non-judgemental environment that we welcome conversations and support within the leukodystrophy community. Hosted and Moderated by Marcie Flores The sessions …
We look forward to having you join us! Join us as we connect with other caregivers to discuss ways on coping with common stressors that caregivers face on a regular basis. This is a safe, non-judgemental environment that we welcome conversations and support within the leukodystrophy community. Hosted and Moderated by Marcie Flores The sessions …
The Scientific Symposium is a meeting for research, medical, and industry professionals. The one-day meeting takes place on the day before the Family Conference and allows physicians, researchers, and more to share projects, discuss ideas, and network in a professional setting. At this time, the Scientific Meeting is only open to medical and scientific professionals. …
The ULF Family Conference is an annual event where affected families can access the world’s top leukodystrophy physicians and researchers – outside of the restrictions of insurance and the hospital setting. Held over two days, the Conference aims to provide the latest scientific information to keep families informed on advances in the field but also …
We look forward to having you join us! Join us as we connect with other caregivers to discuss ways on coping with common stressors that caregivers face on a regular basis. This is a safe, non-judgemental environment that we welcome conversations and support within the leukodystrophy community. Hosted and Moderated by Marcie Flores The sessions …
The CTX Alliance is hosting their first international scientific meeting exclusively dedicated to cerebrotendinous xanthomatosis (CTX). Their goal is to catalyze much-needed international basic research and clinical collaborations for CTX and to advance our understanding for improved outcomes for CTX patients and their families. Meeting agenda features lectures and discussions from renowned CTX researchers, medical …
We look forward to having you join us! Join us as we connect with other caregivers to discuss ways on coping with common stressors that caregivers face on a regular basis. This is a safe, non-judgemental environment that we welcome conversations and support within the leukodystrophy community. Hosted and Moderated by Marcie Flores The sessions …
How To: Community Awareness Events The Power of the Community Join us as we illustrate and expand on the many ways you can spread leukodystrophy awareness and raise funds for the cause! Energize your local community by organizing an awareness event. Dr. Mousumi Bose, a ULF Board of Directors Member, rare disease researcher, and a …
We look forward to having you join us! Join us as we connect with other caregivers to discuss ways on coping with common stressors that caregivers face on a regular basis. This is a safe, non-judgemental environment that we welcome conversations and support within the leukodystrophy community. Hosted and Moderated by Marcie Flores The sessions …
