ALD Raremark

Page no longer active. Follow @RaremarkHealth for #ALD
Our vision is to shape a world where all rare conditions are understood and treated. #RareDisease

[ALD Raremark @ALD_Raremark]

Follow @RaremarkHealth to keep seeing our posts!
Thank you for following us! We're going to be closing down this page but don't worry, just follow @RaremarkHealth for continued news, updates and more - across a range of rare diseases - including #ALD!

[ALD Raremark @ALD_Raremark]

Follow our new page @RaremarkHealth today!
This page is no longer making any active posts, but please hop over to @RaremarkHealth for continued rare disease news, updates - including posts on #ALD!

[ALD Raremark @ALD_Raremark]

Have you followed @RaremarkHealth yet?
This page will no longer making any active posts so follow @RaremarkHealth for continued rare disease news, updates and more - including posts on #ALD!

[ALD Raremark @ALD_Raremark]

#Adrenoleukodystrophy #ALD

[Stop ALD Foundation @StopALD]

Great to see @UtahDepOfHealth now doing newborn screening for #adrenoleukodystropy #ald! https://t.co/6jftg5uIDE

[ALDConnect @ALDConnect]

Two men ride across country to raise adrenoleukodystropy #ALD awareness. Good luck and be safe! https://t.co/4SDZsqugf5

[ALD Raremark @ALD_Raremark]

How is adrenoleukodystrophy (ALD) diagnosed?
Like many rare diseases, it’s not always easy to get a diagnosis for ALD. Learn what doctors are looking for, and how they diagnose someone with #ALD.
#Adrenoleukodystrophy https://t.co/fxfIPUm250

[ALD Raremark @ALD_Raremark]

What is CRISPR? And how does it work?
CRISPR is a powerful gene editing tool that can make changes to the DNA of any living thing. But even if it cures some rare diseases in the future, there are still ethical questions. Learn more here.
#ALD #CRISPR https://t.co/eSXyl034uE

[ALD Raremark @ALD_Raremark]

Being a caregiver for someone with a #RareDisease can be tough. Learn more about the financial challenges faced by rare families and what help is available
#carer #ALD #savetheboys #leukodystrophy https://t.co/deKE8rKnWj

[ALD Raremark @ALD_Raremark]

We’re Raremark, and we’re building an online platform for rare disease patients and caregivers. To make sure it’s useful, we’re running a survey to find out what content patients & caregivers would like to see on our site. Let us know #Adrenoleukodystrophy https://t.co/pBG9FFJSM1

[ALD Raremark @ALD_Raremark]

What is gene therapy?
Around 80% of rare diseases have a genetic link. Many of these diseases don’t have any good treatment options, but gene therapy might help. So what is gene therapy, and how does it work? https://t.co/7Yxj3tJX8q

[ALD Raremark @ALD_Raremark]

What does 'patient voice' mean to you?
#Adrenoleukodystrophy #ALD

[ALD Raremark @ALD_Raremark]

Communicating with doctors and other health professionals isn’t always easy. We look at a few things you can do on your end that can help improve communication.
#RareDisease #RareHeroes #RareHope

[ALD Raremark @ALD_Raremark]

“ALD does not write the story of my son. ALD may only be a chapter in that book.”
Read Darcy’s story about her son’s fight with #ALD
#Leukodystrophy #Adrenoleukodystrophy https://t.co/Zt6J8h4RG6

[ALD Raremark @ALD_Raremark]

We’re running a survey to find out what patients and caregivers would like to see on Raremark. Let us know what’s important to you, including any topics you haven’t had the courage to ask about yet.
Take our survey today!
#Adrenoleukodystrophy #ALD https://t.co/pBG9FFJSM1

[ALD Raremark @ALD_Raremark]

Asking for emotional support when things get tough.
If you’re not asking your friends and family for help, you’re missing out on important sources of support.
#Adrenoleukodystrophy #ALD https://t.co/WZrvX5941s

[ALD Raremark @ALD_Raremark]

What is adrenomyeloneuropathy (AMN)?
Adrenomyeloneuropathy (AMN) is an adult form of ALD that primarily affects the spinal cord, so is usually characterized by weakness and stiffness in the legs.
#Adrenoleukodystrophy #Adrenomyeloneuropathy
https://t.co/ummHGSwUkl

[ALD Raremark @ALD_Raremark]

Brain-sparing cord blood transplantation for the borderline stage of adrenoleukodystrophy.
#Adrenoleukodystrophy #ALD https://t.co/aFcS919ZuY

[ALD Raremark @ALD_Raremark]

What is gene therapy?
Scientists can use gene therapy on cells that are inside or outside the body. Read more in our article.
#Adrenoleukodystrophy #ALD https://t.co/Y9oztsgmmc

[ALD Raremark @ALD_Raremark]

Caring for a rare caregiver: challenges faced by the parents and loved ones of people with rare diseases #ALD #adrenoleukodystrophy #raredisease https://t.co/mw0JIkQASa