Adrenoleukodystrophy CensusALD LandscapeFILL OUT FORM
Help Us Understand the ALD Landscape
At ALD Connect, we are unwavering in our commitment to understanding the global landscape of adrenoleukodystrophy—where individuals with ALD live, their experiences, and how we can best support them. The more individuals we identify with ALD, the stronger and louder our collective voice becomes in driving treatments forward, because there is undeniable strength in numbers. By participating in this global census, you're helping to build a unified, global community that is boldly advancing advocacy, clinical care, education, and research. Together, we are making an impact that will change lives.
If you have been diagnosed with ALD or are the legal guardian of someone who is currently living with ALD, please complete our three-minute form below.
1. Over the age of 18 and have been diagnosed with ALD
OR
2. A parent of a minor or the legal guardian of someone living with ALD
*This form should be filled out for each individual with an ALD diagnosis.
Frequently Asked Questions
What is the ALD Landscape Project?
ALD Landscape IS:
A global census for people with ALD and is the best way for the global ALD community to come together.
A tool to help identify more people who have ALD.
A central place that shows how many people globally have ALD in different countries and subgroups like ethnicity and age.
One way members of our community can be contacted to participate in research and clinical trials.
The fastest and easiest way to drive research. ALD Landscape was built to have as few barriers as possible and be sustainable as our community grows. The results will be kept up-to-date and able to be viewed by the community and our research partners.
ALD Landscape is NOT:
A public display of your information. Your name will never be displayed or shared publicly.
A patient registry. NO long surveys or medical records are required.
Why is ALD Landscape important?
The more people we can identify with ALD, the more powerful we can be in finding treatments because there is power in numbers.
This global census helps advance research by showing that we are one connected, global community. ALD Landscape demonstrates that we have a network of patients and caregivers worldwide that are interested in helping individuals with ALD live their best lives.
I am both a patient and a parent of a child/children with ALD. What should I do?
Fill out the form once for yourself and once for each child with ALD.
My children with ALD are adults. Can I fill out this form?
Please only complete this form if you are the legal guardian of your adult child. Otherwise, please ask your child to complete the form.
My extended family member has ALD. Can I fill out this form?
This form is to be completed by parents/primary caregivers and adults with ALD (age 18 and over) ONLY. If you share the role of parent/primary caregiver, please check in with other caregivers to avoid duplication.
How will my data be used?
Your identifiable data will never be shared or sold to a third-party. The information you provide is used to display generalized information, as illustrated above, and by ALD Connect to share research-related information and other updates with you, and to learn more about our community. By submitting your information you are opting in to receiving communications by ALD Connect.
I would like to learn more about adrenoleukodystrophy. Where can I find resources?
Where can I learn more about genetic testing for adrenoleukodystrophy?
Genetic testing, which looks for a mutation (also known as a variant) in the ABCD1 gene, is considered the gold standard for ALD diagnosis. Talk to your doctor or genetic counselor to start the genetic testing process and for help understanding the results. Genetic testing will identify the specific variant in your family (i.e. how the spelling of the ABCD1 gene is changed in your family). If a variant is found in the ABCD1 gene that is known to cause disease or is very likely to cause disease, it will be considered “pathogenic” or “likely pathogenic”, which will confirm the diagnosis of ALD.
Click here to learn more about genetic testing for adrenoleukodystrophy.
How do I update my details and/or diagnosis?
Please complete the form again with the up-to-date details. Don’t worry, you won’t be counted twice. If you have any questions, please feel free to contact us.
I see someone close to me on the map. Can you connect me with them?
All data shared through ALD Landscape is anonymised. ALD Connect will not share your personal details.
I have another question.
We would love to hear from you - please contact us.
We would like to acknowledge the Kabuki Syndrome Foundation, which helped shape our ALD Landscape initiative. Their global census, Kabuki Count, provided valuable inspiration, and we appreciate their willingness to share ideas that support the rare disease community.
