@ALDConnect

Consortium of advocates and experts advancing care for #adrenoleukodystrophy (#ALD) and #adrenomyeloneuropathy (#AMN) through innovation and collaboration.

aldconnect.org
Joined July 2013
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  • Followers527
283Media
We’re excited to be headed to Baltimore for the 2022 @ALDConnect Annual Meeting and Patient Learning Academy to continue to raise awareness, accelerate scientific advancements and improve health outcomes for patients with ALD. Click here for more info: bit.ly/3z1WRY1
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The afternoon awaits – please join our friends at @aldconnect & share your voice with the FDA. #ALDPFDD #raredisease aldconnect.org/pfdd-english-…
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You're doing a great job Kathleen O'Sullivan Fortin ... and looking so good on camera! #ALDPFDD #RareDisease #ALD @ALDConnect
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Our friends at @aldconnect have kicked off the ALD community's EL-PFDD meeting #ALDPFDD
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Replying to @ALDConnect @StopALD @AldFamily @remember_girls @HuntersHopeFDN @ALD_Raremark @RunforALD @EmDashily
It was a great day, lots of information and I felt a wonderful sense of community. What we all need in these times. Thank you @ALDConnect
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➡️ @ALDConnect focuses on improving the quality of life for those living with adrenoleukodystrophy. They do so by hosting virtual meet-ups, providing financial support to low-income families, and more. (2/3)
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What are the most common symptoms of #Adrenoleukodystrophy (ALD)? Learn which symptoms of #ALD are the most common and how they might affect you or your child: #Leukodystrophy #adrenoleukodystrophy #raredisease raremark.com/adrenoleukodyst…
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The families of X out ALD had an incredible first fundraiser! As one of the world’s top hospitals for kids with the degenerative disease, we’re thrilled by their $128,000 donation to our research ➡️bit.ly/2TV1oqb #ALD #adrenoleukodystrophy #leukodystrophy #raredisease
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A gene therapy using autologous stem cells appears to slow the progression of cerebral adrenoleukodystrophy, but some safety questions remain. @icnapedia #icnc2020 #icnapedia @MassGeneralNews @MGHNeurology bit.ly/3mptTZb
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"Rare caregiving" costs in the US. When someone in your family has a rare disease and you’re the primary caregiver, your household income is probably taking a hit. What are the facts, and what can help? #Adrenoleukodystrophy #ALD bit.ly/3aeNPYJ
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It's metabolic awareness week so we're sharing some ALD articles to help raise awareness. Today we look at: How is adrenoleukodystrophy (#ALD) diagnosed? #Adrenoleukodystrophy #MetabolicWeek2020 bit.ly/2VlYbAT
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ALD Connect Webinars. Experts from varying fields take questions and discuss a broad range of topics requested by ALD patients and their families in these webinars from @ALDConnect #ALD #Adrenoleukodystrophy bit.ly/2zPQnjy
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Support Expanded #NewbornScreening Across the U.S. Being born in the wrong state shouldn't cost a child's life. Please take a few moments and contact your U.S. Representative at the link below: votervoice.net/mobile/EveryL…
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How can I communicate better with my healthcare providers? You may not always have doctors with great communication skills. We look at a few things you can do to improve communication. #ALD #Leukodystrophy #adrenoleukodystrophy #ALDAwareness bit.ly/2UyM2rp
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ALDConnect retweeted
TeamALD@ald_team1 Oct 2019
We started! Today we started the ALD newborn screening pilot in the Netherlands. #adrenoleukodystrophy #scanstudy #newbornscreening #pediatrics #publichealth #hielprik #netherlands #researchisfun #milestone @rivm @ZonMw @amsterdamumc @SteunEmma @Metakids @Stofwissel_VKS
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We're Joining Forces with ALD Connect - mailchi.mp/myelin/were-joini…
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Please read & share this very personal musing of how #AMN/#ALD affected our lives & (eventually) killed my husband: wp.me/pb8aaN-2D. #Adrenomyeloneuropathy #raredisease #widow #griefjourney CC: @ALDConnect, @StopALD, @alexTLCsupport
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ALDConnect retweeted
TeamALD@ald_team19 Mar 2019
Women with ALD are not just carriers, as that description implies these women never experience any symptoms. For more info, please read the #OpenAccess publications: bit.ly/2WgjPov (2019) and bit.ly/2TOWLA6 (2014) and/or visit: bit.ly/2Y9oZnJ
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ALDConnect retweeted
TeamALD@ald_team28 Feb 2019
The importance of #ALD #NewbornScreening illustrated. Before 10 yrs of age - 1 in 2 ALD boys develops adrenal disease - 1 in 3 ALD boys develops cerebral ALD NBS, key to saving lives. It allows prospective monitoring & early intervention. #RareDiseaseDay bit.ly/2tFQ9Vd
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Great Executive Director role rare disease non-profit @ALDConnect. See the job posting and apply now! LinkedIn buff.ly/2GZQDxy
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