ALD Connect

ALD Landscape Project

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 with adrenoleukodystrophy we document, the more we demonstrate the need for new treatments—making ALD a priority for biotech companies, academic institutions, clinicians, researchers, government agencies, and donors—all of whom play a critical role in driving progress.

Our collective voice becomes louder in driving progress forward, because there is undeniable strength in numbers. By participating in this global census, you’re helping to build a unified community that is boldly advancing advocacy, clinical care, education, and research. Together, we are making an impact that will change lives.

ALD Landscape Project

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.

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.
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