Consortium of advocates and experts advancing care for #adrenoleukodystrophy (#ALD) and #adrenomyeloneuropathy (#AMN) through innovation and collaboration.
Joined July 2013
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283 Photos and videos
6 Dec 2022
Exciting research study opportunity! The University of MN is looking for girls & women ages 14-25 with a family history of X-linked adrenoleukodystrophy (X-ALD) to share their experiences to improve medical care for girls & women with X-ALD in the future. umn.qualtrics.com/jfe/form/S…
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13 Nov 2022
ALD Connect 2022 Ambassadors of the Year: Christie Higuera and Ken Dieffenbach. Congratulations to you both!!
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12 Nov 2022
Kathleen O’Sullivan Fortin opening the Patient Learning Academy this morning and sharing many exciting updates from ALD Connect! #ald #amn #aldconnect
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11 Nov 2022
A highlight from day 1 of the ALD Connect Annual Meeting today was our amazing patient experience panel!
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ALDConnect retweeted
11 Nov 2022
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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11 Nov 2022
Welcome to the 2022 Annual Meeting & Patient Learning Academy! Please consider making a donation at the link below. All donations will be matched up to $50,000 by our angel donor. #ald #amn #aldconnect aldconnect.org/donate/
22 Jul 2022
Call in now to discuss what treatments you’ve tried, what’s worked, what hasn’t, and what you want to see for future treatments of adult ALD and AMN at the #ALDPFDD
22 Jul 2022
Symptomatic adults with ALD and AMN or their caregivers, get ready to call in live for the #ALDPFDD and join the meeting live at aldconnect.org/pfdd. Make sure your voice is heard!
ALDConnect retweeted
22 Jul 2022
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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ALDConnect retweeted
22 Jul 2022
You're doing a great job Kathleen O'Sullivan Fortin ... and looking so good on camera! #ALDPFDD #RareDisease #ALD @ALDConnect
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ALDConnect retweeted
22 Jul 2022
Our friends at @aldconnect have kicked off the ALD community's EL-PFDD meeting #ALDPFDD
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22 Jul 2022
Symptomatic adults with ALD and AMN or their caregivers, get ready to call in live for the #ALDPFDD and join the meeting live at aldconnect.org/pfdd. Make sure your voice is heard!
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22 Jul 2022
Symptomatic adults with ALD and AMN or their caregivers, submit your comments for the #ALDPFDD by emailing pfdd@aldconnect.org and join the meeting live at aldconnect.org/pfdd. Make sure your voice is heard!
22 Jul 2022
Join us live for the #ALDPFDD now! Go to aldconnect.org/PFDD to watch and join the conversation!
18 Nov 2020
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18 Nov 2020
Our Annual Meeting and Patient Learning Academy would not have been possible without our sponsors. Thank you!
18 Nov 2020
Thank you to everyone who made our 2020 ALD Connect Annual Meeting and Patient Learning Academy a success! #aldconnect
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14 Nov 2020
Dr. Molly Regelmann, Dr. Troy Lund, Dr. Keith Van Haren, Dr. Florian Eichler, and Dr. Joshua Bonkowsky answer questions from the ALD community during our “Ask the Experts” panel. #ald #adrenokeukodystrophy #aldconnect
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14 Nov 2020
Restless Leg Syndrome: It’s a real thing. It exists. It’s not a joke. Dr. Winkleman explains symptoms and solutions. #ald #adrenoleukodystrophy #aldconnect
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14 Nov 2020
Dr. Regelmann advising on how to ensure appropriate treatment of adrenal insufficiency in case of adrenal crisis. #ald #adrenoleukodystrophy #aldconnect
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