Parents of ALD Newborns | HealthUnlocked

Parents of ALD Newborns

Hydrocortisone questions

Hello ALD parents, We've had some incidents with my son and I wanted to know if ...

Cord blood banking

Hello, I am expecting my second child and even though I dont know if she will ca...

Probably Genetic Survey

A team of researchers at Probably Genetic is working tirelessly to get undiagnos...

NAVIGATING THE DIAGNOSIS OF ALD

bluebird bio has launched a new website https://www.navigatingald.com/ to help g...

UMN Survey for Newborn Families

Minnesota ALD Registry Study (MARS) Are you interested in helping researchers at...

Stanford Survey

Please consider helping out with this survey. You'll be helping with research fo...
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fightaldPartner

Help my Son

I want to know what kind of therapy it will help to my son to cure this adrenole...

Aidan Jack Seeger Foundation

Hello Everyone, The Aidan Jack Seeger Foundation was established to address the ...

Parents Advisory Board

bluebird bio plans to host a caregiver advisory board on November 7th in advance...

ALD Connect meeting

How many of you members will be attending the ALD Connect meeting in Boston next...

Positive newborn screening

My daughters newborn screening came back positive for ALD and we are currently w...

Rare Bears for ALD Boys

We just gifted our second round of Rare Bears for ALD boys. If you haven't got y...

ALD Newborn Research Study

From ALD Connect: Are you a parent whose child has been identified through newbo...

ULF Conference

I just wanted to remind you that the United Leukodystrophy Foundation's annual f...

Neonatal Adrenal Leukodystrophy

Hi everyone 👋 I just stumbled across this during my routine search on the inter...

Newbie

Hi, I am a parent of a child diagnosed with ALD. It was found through the NBS a...

EEG Testing

Hey Everyone, Kyrie Did His First EEG Test On 2/26/19. She Said It Tested For S...

PLEASE READ THE BELOW INFO from UNIVERSITY of MINNESOTA

We are excited to share that the the Minnesota Adrenoleukodystrophy Registry Stu...

Standards of Care as defined by UMN doctors

Bloodwork to check for adrenal insufficiency should be done at 4 months and repe...

ALD prenatal genetic testing for moms?

Does anyone know of any efforts being made to include ALD in the prenatal geneti...

ULF Meeting in June

I wanted to give all you parents a heads up that the United Leukodystrophy Found...

Hydrocortisone question

It was recently determined time to begin daily oral steroids for my son. We hav...

How does new born screening of ALD help?

Could anyone share some info on how does the new born screening help in treating...

Identify the carrier.

How to diagnose if I am the carrier or my wife is. The doctors just assume that ...

Father of two son's diagnosed with ALD

I came here through aldconnect.org. I have two son's. Both of them are diagnose...

Q tratamiento m ayudaría para la ALD

Necesito con urgencia tratamiento e información sobre la enfermedad

Understanding My Childs Health

Hi, My name is Jessica. My newborn Child was diagnosed with X-linked Adrenoleu...

More states adding ALD newborn screening update.

I am happy to share that North Carolina is following several other states by scr...
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fightaldPartner

When you were first (and or your child) diagnosed with ALD, what was your doctor’s initial advice?

Here is my story of how I had the news broken to me...let us know your story to ...

Hello Everyone! I am a ALD Mom ❤️

Hello Everyone! My name is Kerri and my son, Gregory was diagnosed with ALD in ...
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About us

We are here to offer support as you navigate through your babies first few years of life after a diagnosis of ...

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