If you or a family member has adrenoleukodystrophy (ALD), then one resource you may want to use is ALD Connect.
What is ALD Connect?
A group of clinicians, scientists, patients, and advocates created ALD Connect in 2013.
The nonprofit organization represents seven clinical centers across North America and one clinic in the Netherlands. More centers may join in the future.
The goal of the organization is to improve outcomes for people with the genetic brain disorder. It works to do this by raising awareness, accelerating research into treatments, and improving clinical care for ALD patients.
How can I get involved?
If you are a male with ALD — the vast majority of patients — or are a parent of a patient, a woman with ALD, or a caregiver of a patient, then you are eligible to enroll in the ALD Connect patient portal. Here, you will fill out a survey about what topics interest you. There also is a symptom tracker that allows you to rate your daily abilities on a scale and then track how you are doing over time.
How will participating in the patient portal help me?
The patient portal will help you track your health over time. This can help your doctor to treat you more effectively.
In addition, when ALD Connect conducts research, the portal will contact you to let you learn more about the study. You may be given the option to participate in new studies into the disease and its potential treatment. The portal, therefore, allows you to participate in the ALD research that matters most to you.
The information that the portal gathers helps scientists and clinicians know what issues are most important in their patients’ lives, what symptoms affect their quality of life most, and what areas of patient life current therapies don’t address.
How else can I help ALD Connect?
If you are interested in volunteering, advocating, fundraising, or participating in other ways, ALD Connect has opportunities for you. For example, the organization offers scholarships, a peer mentor program, and patient and family support programs.
Last updated: July 22, 2020
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Adrenoleukodystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
