Cure LBSL

/ ARLINGTON /

Cure LBSL

LBSL is a degenerative brain/spinal cord disease. There is no cure but there is lots of hope. / a.k.a. #TheAwesomeDisease Cure LBSL, formerly known as A Cure for Ellie, is on a mission to support patients, raise awareness and find a cure for leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation (LBSL). “A Cure for Ellie” is a registered non-profit organization dedicated to raising awareness and funds for research into LBSL, a progressive and very rare genetic disorder that affects the brain and spinal cord; most often developing in children, affecting their ability to walk, then even to stand and coordinate fine and gross motor skills. We also provide information and support to families and individuals living with the disease.
Upravit Kontaktovat
462829156
IČO
2013
Založeno
ARLINGTON, VA 22206 USA
Adresa
acureforellie.org
Web
curelbsl
Twitter (500)
CureLBSL
Facebook (1900)

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31 črv
Cure LBSL

📣 JOIN US TOMORROW! 📣 We've been working for months to prepare for our big EL-PFDD meeting to share with the world about what it's like to live with LBSL and what our community wants in a potential treatment. Register at curelbsl.org/el-pfdd and tune in tomorrow at 10 a.m.! (LBSL community: We need your input tomorrow! Join us virtually and in-person to share insights and experiences about living with this rare disease!) #LBSLELPFDD #raredisease #advocacy #cureLBSL (fb)

30 črv
Cure LBSL

👀 ARE YOU READY? 👀 Tune to our LBSL externally-led Patient-Focused Drug Development meeting on Friday to hear from the LBSL community about living with this rare disease and their perspectives on future treatments. Join us virtually or in-person at 10 a.m. EST. Register today at curelbsl.org/el-pfdd. Can't make it on Friday? Our LBSL community can submit comments at curelbsl.org/el-pfdd! #LBSLPFDD #raredisease #advocacy #cureLBSL (fb)

Poslední komentáře

So inspired by organizations like Cure LBSL! Together we can drive awareness and hope for those impacted by this rare disease. 💙 #CureLBSL #Hope
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This is such a powerful initiative! Looking forward to the PFDD meeting and hearing the voices of those who truly understand LBSL. Let's unite for awareness and a future with a cure! 🙌✨ #TheAwesomeDisease #CureLBSL
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Poslední diskuze

1. How can we effectively promote awareness about LBSL in communities to support patients and families affected by this disease?
Odpovědí: 3, Naposledy před 1 den detail
2. What key topics do you believe should be addressed during the upcoming PFDD meeting with the FDA to advocate for better treatment options for LBSL?
Odpovědí: 3, Naposledy před 1 den detail

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O společnosti

- 202, H96 -

Calling all LBSL patient and families. The LBSL externallyled PFDD meeting will be held on Friday Aug. 1 in Washington D. C.

Neurologie, neurověda
23 Vacancy More Detail