It is our aim to provide portals to information that directly impacts the quality of life for people living with ALS and their caregiver, friends, and family.
This is an incredibly informative, helpful and concise resource for individuals and families living with ALS.
Your ALS Guide is here to help improve everyday quality of life for families impacted by ALS. Find trusted information, practical tips, educational videos, expert advice, helpful resources, and more—all in one place.
Your ALS Guide
https://www.youralsguide.com
Interested in Advocacy and Awareness?
More Than Our Stories
Every Great Public Policy Started With An Individual With A Good Idea. This annual, hybrid virtual and in-person conference is your chance to brainstorm, discuss, learn, and form personal calls to action. You’ll then take your case to your legislators.
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I Am ALS Legislative Affairs Team
This organization has the mission to empower and support the ALS community in their legislative advocacy efforts. They strive to build a team of passionate revolutionaries who together will develop meaningful relationships with federal legislators to secure public policies that will expand access to clinical trials, accelerate ALS therapies, eliminate access barriers and support those living with ALS and their loved ones.
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EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
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Interested in Trials, Research And Clinical Studies?
National Institutes Health (NIH) | National Institute of Neurological Disorders and Stroke:
The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease for all people. To support this mission, NINDS: Supports and performs basic, translational, and clinical neuroscience research through grants-in-aid, contracts, scientific meetings, and research in its own laboratories, and clinics.
NINDS also funds and conducts research training and career development programs to increase basic, translational, and clinical neuroscience expertise and ensure a vibrant, talented, and diverse workforce. NINDS then promotes the timely dissemination of scientific discoveries and their implications for neurological health to the public, health professionals, researchers, and policy-makers.
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NIH News In Health: Advances in ALS
NIH | National Library of Medicine | National Center for Biotechnology Information Clinical Trials
ClinicalTrials.gov is a website and online database of clinical research studies and information about their results. The purpose of ClinicalTrials.gov is to provide information about clinical research studies to the public, researchers, and healthcare professionals. The U.S. government does not review or approve the safety and science of all studies listed on this website.
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National ALS Registry Centers for Disease Control:
The National ALS Registry is a program to collect, manage, and analyze data about persons with ALS. It includes data from existing national databases and information provided by persons with ALS who choose to participate. Researchers can use Registry data to look for disease pattern changes over time and try to identify whether there are common risk factors among people with ALS. Additionally, the Registry provides updated links for participant resources like ALS clinical trials. Persons living with ALS can add their information to the Registry by clicking the button at the top left of this page.
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International Alliance of ALS/ (Motor Neuron Disease) MND Associations:
The Alliance is a global network of ALS/MND associations informed by PALS/CALS, that builds capability for its members and connects to external stakeholders. We help members thrive by adding value to existing and future associations through curation and creation of information and by acting as a global gateway through which Alliance Members, PALS and CALS, internal, and external stakeholders connect.
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