ALD Connect

Get Involved with ALD Connect!

ALD Connect is more than an organization—we are a community dedicated to improving the lives of those affected by adrenoleukodystrophy. Your involvement helps drive research, support, and advocacy. Please consider getting involved and help us make a real impact. Explore the opportunities below to join us in shaping the future of ALD.

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.

Join the ASXL Census

Annual Meeting and Patient Learning Academy

The Annual Meeting and Patient Learning Academy is ALD Connect’s flagship event, bringing together patients, families, experts, researchers, and our industry partners. This event offers a unique opportunity to learn about the latest advancements in ALD, connect with others in the community, and participate in advocacy efforts.

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Ways to Give

Families facing ALD need people like you, and there are many ways to help. Make a one-time gift. Become a monthly donor. Give through your donor-advised fund, stock, or cryptocurrency. Or leave a legacy gift that keeps your impact alive for generations. However you choose to give, your generosity fuels research, strengthens our community, and transforms lives for individuals and families affected by ALD.

Explore Ways to Give

Community Calendar

The ALD Connect Community Calendar is your go-to resource for staying informed about upcoming events, webinars, support groups, and other opportunities to connect with the ALD community. We keep the calendar updated with all the latest happenings to ensure you never miss an event.

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Community Calls

Community Calls are a cornerstone of ALD Connect’s efforts to build a strong and supportive network. These calls offer a platform for patients, caregivers, and professionals to share experiences, ask questions, and offer support. Each call focuses on a specific topic, providing valuable insights and fostering connections within the community.

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ALD Family Weekend

ALD Family Weekend is a special event dedicated to bringing together families affected by adrenoleukodystrophy (ALD). This weekend offers a supportive environment for patients and their families to connect and share experiences.

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Industry Advisory Council

Our Industry Advisory Council serves as a vital forum for collaboration between ALD Connect and leading industry representatives. This quarterly meeting fosters open dialogue, allowing us to exchange insights, align on shared goals, and strategize on advancing ALD research. Together, we aim to accelerate breakthroughs, improve patient outcomes, and drive innovation in the field of adrenoleukodystrophy.

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Patient-Led Planning Committee

Our Patient-Led Planning Committee (formerly known as “Workgroup 4”) is a dedicated group of patients and caregivers who meet monthly. This committee provides important feedback and perspectives to our leadership team. It is also a way for patients and caregivers to volunteer their time and talents, helping to shape initiatives that directly impact the ALD community.

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Get In Touch

Whether you're looking to contribute to research, attend a learning event, or connect with others in the community, ALD Connect offers a variety of ways to get involved. Explore the sections above to find opportunities that resonate with you, and join us in our mission to support those affected by ALD.

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