Amyotrophic Lateral Sclerosis (ALS)

Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive neurological disease which attacks the neurons involved with voluntary movement, called motor neurons. It is also known as Motor Neuron Disorder (MND) or Lou Gherig’s Disease. ALS is a disease which doesn’t have a wide range of treatment options, although there have been advances and a lot of research is ongoing.

What is ALS?

ALS is a progressive neurodegenerative disease which leads to severe disability, and eventually results in death. The disability, which is caused by the loss of voluntary function, is directly connected to the damage and gradual loss of motor neurons. Motor neurons are nerve cells that extend from the brain down to the spinal cord and to muscles throughout the body. They are essential for sending messages from the brain to the muscles.

what is ALS

For more details see the references at the bottom of the page.

How does ALS affect the body?

effects of ALS
With ALS, motor neurons degenerate or die, and stop sending messages to the muscles.
effects of ALS
Eventually, the brain loses the ability to control voluntary movement, and patients lose their strength and are no longer able to move their arms, legs, and body.
effects of ALS
When muscles in the diaphragm and chest wall fail, the patient loses the ability to breathe and ventilation support is needed.
life expectancy of ALS
Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear. However, about 10% of people with ALS survive for 10 or more years.

For more details see the references at the bottom of the page.

Who gets ALS?

chances of getting ALS
About 5-10% of all ALS cases are hereditary, with the remaining 90-95% being sporadic. This means the disease seems to occur at random with no clearly associated risk factors and no family history of the disease.
chances of getting ALS
ALS is most common between the ages of 40 and 70, with a higher occurrence in people aged over 50.
chances of getting ALS
Although classified as a rare disease based on its prevalence, ALS is in fact quite common. There are approximately 140,000 people diagnosed worldwide each year.

For more details see the references at the bottom of the page.

Is there a cure for ALS?

Unfortunately, there is currently no cure for ALS. However, as stated by medical centre the Mayo Clinic:

"Treatments can't reverse the damage of amyotrophic lateral sclerosis, but they can slow the progression of symptoms, prevent complications and make you more comfortable and independent.".

Treatments are designed to relieve symptoms and improve the quality of life for individuals. Supportive care is best provided by multidisciplinary teams of healthcare professionals such as doctors, nurses, and a variety of therapists, with the aim of keeping patients as mobile and comfortable as possible 2.

Medicines for treating ALS

These are some of the medicines that are used to treat patients with ALS. This is not intended to be a comprehensive list or guide.

Edaravone-Radicut/Radicava
Edaravone (Radicut/Radicava)

A radical scavenger approved by the Japanese PMDA and in the American FDA for the treatment of ALS.

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Edaravone-generic
Edaravone generic

A generic version of edaravone, produced by several manufacturers. It is approved by the Japanese PMDA for the treatment of cerebral infarction.

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Riluzole-Rilutek
Riluzole (Rilutek)

Approved by many agencies including the European EMA, the American FDA, and the Australian TGA, for the treatment of ALS.

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Riluzole-Teglutik/Tiglutik
Riluzole (Teglutik/Tiglutik)

A liquid form of riluzole approved in some European countries (for example, Italy and Spain) and by the American FDA or the treatment of ALS.

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Riluzole-generic
Riluzole generic

A generic version of riluzole, produced by several manufacturers.

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Ibudilast-Ketas
Ibudilast (Ketas)

It has an anti-inflammatory and neuroprotective effect on the brain. It has been granted orphan drug designation* for the treatment of ALS by the European EMA, and the American FDA.

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Tudcabil-Tudca
Tudcabil (Tudca)

A bile salt that is found naturally occurring in the body. It has been granted orphan designation* by the European Medicines Authority (EMA) for the treatment of ALS.

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Generic drugs are medicines created to be the same as an already marketed brand-name drug in dosage form, safety, strength, route of administration, quality, performance characteristics, and intended use. A generic medicine works in the same way and provides the same clinical benefit as its brand-name version.

* Orphan drugs are medicines that may have not been approved by a regulatory agency, but due to the seriousness of the condition; the lack of alternatives for diagnosis, prevention or treatment; or the rarity of the condition, are treated with special care by the regulatory agencies. The Orphan Drug designation is an independent process of each regulatory agency.

If you would like to know more about any of the medicines above and how you might be able to access them, you can speak to one of our qualified pharmacists.

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Data from Patients *

Gender

Gender

Age at first symptom

Age-at-first-symptom

Common symptoms

Commom-symptoms

* These data have been taken from the website PatientsLikeMe. This platform was initially built for people with ALS, with the intention of connecting patients. The platform has now grown to include more than 600,000 patients who track and report on their experiences with 2,800 conditions and is one of the largest archives of patient-reported, data available today.

On PatientsLikeMe, there are a total of 12,230 patients who have amyotrophic lateral sclerosis. Not everyone has contributed to all of these statistics 4.

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Availability of ALS medicines

Although there have been advances in medicines for ALS and a lot of research is ongoing, not all medicines are available to all patients globally. Some medicines might be approved in one location, but not in another. Alternatively, they might be approved but not yet available in all countries. Patients to whom medicines are not accessible can import them into their country, safely and legally.


With a prescription from the patient’s treating doctor TheSocialMedwork can support in ordering medicines for ALS from outside your country. Our team of pharmacists and regulatory experts delivers elsewhere approved medicines around the world every day. They are ready to assist with sourcing and delivery, and will guide you through every step of the process. We always advise patients to ask their health insurance about reimbursement of the medicine.

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More information about Amyotrophic Lateral Sclerosis (ALS)

Need support?

If you are a patient with ALS or have a relative with ALS, you might want to ask questions about the medicine for this disease. If you’d like to ask questions about how to get a medicine for ALS, or about our service in general, our team of qualified pharmacists and experts are ready to offer support and assist with queries. Our team speaks 17 different languages and is ready to help.

Who is TheSocialMedwork?

TheSocialMedwork makes the latest approved medicines available to patients, hospitals and doctors around the world, in a legally compliant way. We source innovative medicines at the best possible prices and ensure safe and efficient delivery. We have successfully delivered to over 70 countries worldwide, and have already supported over 11,000 doctors and patients.

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