Sara, our CEO, and Kristina, our Research Analyst are attending the SfE BES conference in Harrogate
We have a conference stand to bring awareness to the critical link between primary adrenal insufficiency (Addison's Disease) and Adrenoleukodystrophy (ALD) 💙
#AddisonsDisease #Adrenoleukodystrophy
New Enzyme Discovery Offers Hope for Adrenoleukodystrophy Diagnosis and Treatment #Japan #Tokyo #Adrenoleukodystrophy #C26:0 #Diagnostic_Markers
ALD Connect undertook an Externally-Led Patient-Focused Drug Development meeting to understand, from the patient and caregiver perspective, the impact of living with adult manifestations of ALD 💬
Article: https://alextlc.org/news/living-with-ald-article/
#ALD #Adrenoleukodystrophy #Leukodystrophy
Yska et al. show that the new quantitative MRI techniques, myelin-water imaging and multi-shell diffusion-weighted imaging, are sensitive to microstructural changes in the brains of patients with the metabolic disease #adrenoleukodystrophy. Full article 👉 buff.ly/fzQnynK
🟡 ALD and AMN can both cause adrenal gland dysfunction known as Addison’s disease
To find out more:
ALD - alextlc.org/condition/ad...
AMN - alextlc.org/condition/ad...
#adrenoleukodystrophy #adrenomyeloneuropathy
#adrenoleukodystrophy #rarediseaseawareness #raredisability #disabilityawareness #disability #disabilityinclusion #disabilitysupport #lifewithdisability #invisibledisability #livingwithald #rodrigowrites #myjourney #realstory #bloglife #chronicillness #chronicillnessawareness #chronicillnessjourney
I’m starting a blog!
Living with ALD has taught me a lot and now I want to share that journey. Not just the hard stuff, but the good, the weird, and the everyday moments too.
If you're down to tag along, tag along.
youtube.com/shorts/1pio1...
#AintLoosingDreams #Adrenoleukodystrophy #ALD #Blog
If you haven’t watched my first video, check it out. It’s where this all began. 📷
📷 First video: youtube.com/shorts/gx0R1eJ…
#ALD #DisabilityAwareness #disabledandproud #chronicillness #raredisease #mystory #comingoutstory #inspiration #realtalk #adrenoleukodystrophy #realtalk
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🔹 Share to spread awareness
🔹Search my name r0dr1g0cs on social media
#Ganas #AintLosingDreams #MyStory #ALD #Adrenoleukodystrophy #DisabilityAwareness #Equality #DisabilityPride #BreakingBarriers #MyJourney #Inclusion
6 years ago, my life changed. In 2019, I was diagnosed with ALD, a rare disorder that affects the brain, spinecord & adrenal glands. It’s a challenge, but it won’t define me. I don’t have a disability,I have a superability.
youtube.com/shorts/gx0R1eJ… #Adrenoleukodystrophy #ALD #disability
ALD and MLD are in the conditions being screened for in the programme 💙
To find out more about the study: www.generationstudy.co.uk
#adrenoleukodystrophy #metachromaticleukodystrophy
The #Recordings of our #WinterSchool "Challenges of Treating Rare Neurological Diseases" are now online!Find them now online here: www.ern-rnd.eu/education-tr...
Like for example "Leriglitazone Trial in #Adrenoleukodystrophy" by C.S evin and F. Mochel.
www.youtube.com/watch?v=IZLJ...
To find out more about our Screen Our Boys Campaign, visit: alextlc.org/campaign/scr...
#alextlc #screenourboys #newbornscreening #adrenoleukodystrophy
