Spring is for Setting World Records and Raising ALD Awareness
This week is a small win for adrenoleukodystrophy (ALD) awareness and for these mini-bikers. Kevin Bean’re and Tom Ford are mini-biking across the country, from Florida
- Rare Disease News
Alex, The Leukodystrophy Charity
Alex, The Leukodystrophy Charity
Alex, TLC is a patient support group and UK registered charity for patients and families with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN).
Alex, TLC:
- Provides practical, emotional and financial support to patients and families with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN)
- Improves public and medical awareness of both conditions
- Promotes research, best practice in treatment and improved diagnostics
Some of Alex, TLC’s notable projects are exploring the link between ALD and Addison’s Disease, Project Bostock and Newborn Screening.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
- Adrenoleukodystrophy
- Adrenomyeloneuropathy
- Leukodystrophy
Resources & Support
Patient Worthy Posts on Adrenoleukodystrophy (ALD)
Help Us Raise Awareness About Adrenoleukodystrophy, or ALD!
The word adrenoleukodystrophy doesn’t exactly roll off the tongue, does it? Adrenoleukodystrophy (ALD) is an exceptionally rare genetic disease that affects one in 18,000 males. If you’re
ALD Mom Tells It Like It Is
I recently got together with a sweet friend, who has a six-month-old. It was the first time we’d actually talked face-to-face since her daughter was
ALD: Finding the Silver Lining of Memories
The memories we have of growing up should be the type that we look back on and smile about. That is not to say that
Be Inspired! 8-Year-Old Superhero Takes on ALD
Second grade. So big but so little. An academic year filled with spelling and vocabulary words, simple math fast facts, and learning how to use
Parents Win Victory in Newborn Screening for Rare Disease ALD
While cliché, it is still true that children are the future. That is why it is so important that we find ways to protect them
