ALD Connect, Inc.
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463749890
2013
Middleton, MA 01949 USA
aldconnect.org
aldconnect
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.
[1] https://aldconnect.org [2] https://aldconnect.org/about-us/ [3] https://fconline.foundationcenter.org/fdo-grantmaker-profile/?collection=grantmakers&activity=result&key=1150039 [4] https://projects.propublica.org/nonprofits/organizations/463749890 [5] https://rarediseases.org/organizations/ald-connect/
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News
June Community Calls are posted! Links to register can be found on our Community Calendar: https://aldconnect.org/get-involved/community-calendar/ (fb)
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. This funding supports the development of our Collaborative Research Network for ALD. By uniting patients, families, clinicians, and scientists, ALD Connect aims to create a patient-prioritized research agenda that addresses the most pressing needs of the ALD community. ThIs meeting provides an invaluable opportunity for ALD Connect to engage with fellow grantees, share insights, and build partnerships that will drive scientific discovery and improve outcomes for those affected by ALD. Through continued collaboration and support, ALD Connect remains committed to advancing research and finding effective treatments for patients in our community. (fb)
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About the organization
- 978, G01, H96, E01 -
We are ALD Connect At ALD Connect our mission is to improve the health outcomes of individuals affected by adrenoleukodystrophy ALD. By empowering patients raising awareness and accelerating the translation of scientific breakthroughs into better clinical care we aim to make a lasting impact on the ALD community. Together we are committed to revolutionizing care and driving progress toward a cure. Who We Are ALD Connect is a nonprofit organization that unites patients families physicians scientists advocates and industry professionals.
Alliance/Advocacy Organizations Neurology, Neuroscience Alliance/Advocacy Organizations
