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Amyotrophic Lateral Sclerosis – ALS

man pushing woman in wheelchair on city street: Resources for ALS patients and caregivers

 

Managing ALS as a patient or family caregiver can be overwhelming and difficult. We hope you find these resources for ALS patients and caregivers helpful.

Amyotrophic Lateral Sclerosis Association

www.ALSA.org

800-782-4747

This non-profit is focused on treating and curing ALS by supporting research, advocating, educating the public and more, while providing compassionate care and support to patients and their families. The website provides information on ALS symptoms, diagnosis, treatments, as well as the latest news and information. There is a national network of local chapters who provide educational materials and support groups. A call center provides information on ALS, advice on helpful products, assistance, insurance, caregiving responsibilities and more. Referrals for doctors are also provided. (800-782-4747; Monday – Friday, 7:30 am – 4:00 pm Pacific Time).

ALS Therapy Development Institute

www.ALS.net

This non-profit organization is a drug discovery center focused solely on ALS. They are a nonprofit biotech who operates “without regard to profit motive or politics”. Led by people with ALS and drug development experts, they are funded by a global network of supporters unified to end ALS. the website provides information on ALS, an extensive list of clinical trials all over the world, and links to other organizations. You can also connect with other ALS patients and families.

CCALS – Compassionate Care ALS

www.ccals.org

This non-profit supports people diagnosed with ALS, their families and communities as they navigate the physical and emotional challenges of ALS. The organization provides resources including equipment, educational workshops, Medicare/Medicaid assistance, guidance and awareness in living with ALS, caregiving, and end-of-life issues.