ALD Connect, Inc.
Our mission is to improve health outcomes for individuals with ALD by empowering patients/caregivers, raising awareness, and accelerating the translation of scientific breakthroughs into better clinical care. https://linktr.ee/aldconnect ALD Connect is a non-profit organization that brings together patients, families, physicians, scientists, advocates, and industry. Our mission is to improve health outcomes for patients with X-linked adrenoleukodystrophy (ALD) by empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care.
ALD Connect, Inc.
Overview
ALD Connect, Inc. is a 501(c)(3) non-profit organization in the United States, dedicated to improving the health outcomes of individuals affected by X-linked adrenoleukodystrophy (ALD). Founded in 2013, ALD Connect brings together patients, families, physicians, scientists, advocates, and industry professionals to address the challenges associated with ALD.
Mission and Vision
The mission of ALD Connect is to empower patients, raise awareness, and accelerate the translation of scientific breakthroughs into improved clinical care for ALD patients. The organization's vision is bold, aiming to revolutionize care, end suffering from ALD, and ultimately find a cure for the disease. Through advocacy, education, research, and support, ALD Connect seeks to enhance the quality of life for those affected by ALD.
Activities
ALD Connect's activities are focused on several key areas:
- Advocacy: Providing a voice for patients and families to influence healthcare policies and practices related to ALD.
- Education: Offering educational resources to help the community understand the disease better.
- Research: Supporting research efforts that could lead to improved treatments or a cure for ALD.
- Support: Offering vital support to individuals and families impacted by ALD, helping them navigate the healthcare system and cope with the disease.
Structure and Funding
As a 501(c)(3) non-profit, donations to ALD Connect are tax-deductible. The organization primarily relies on contributions for its financial support, with nearly all of its revenue coming from charitable gifts. The financial health of ALD Connect reflects its reliance on the generosity of donors, with minimal other sources of income.
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Middleton
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ALD Connect, Inc.
We are attending the @chanzuckerberginitiative Science in Society: Rare As One Network 2025 Meeting taking place this week in Las Vegas, Nevada. This gathering brings together patient-led organizations, researchers, and advocates to foster collaboration and accelerate progress in rare disease research. ALD Connect was awarded an $800,000 grant from CZI to strengthen our organizational and scientific capacities over the next five years.
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