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Spanish Language ALS Resources


To read this information in Spanish, click here.

Getting an ALS diagnosis, finding resources and information, and connecting with the right organizations can be overwhelming and difficult. For Spanish-speakers impacted by ALS, the addition of a language barrier can complicate the process, and can become a seemingly insurmountable hurdle to accessing care. To discuss this situation and possible solutions, I AM ALS’ Many Shades of ALS hosted two events to bring the Hispanic ALS community together to explore how language impacts one’s access to healthcare, information, advocacy, and resources within the ALS landscape. The team also worked to compile Spanish language resources such as support groups, guides, and advocacy opportunities which are included below.

 

Organizations & Resources

  • ALS Association of ArgentinaThe ALS Association of Argentina’s website hosts a wide variety of information, resources, and events about ALS in Spanish.
  • ELA/EMN page – The Spanish Association for the Support of Research and Protection of the Right of Patients Suffering from ALS. This site is a great resource if you just received your diagnosis or are looking to better understand what ALS is.
  • adELA – Asociacion Espanola de Esclerosis Lateral Amiotrofica – Use the Spanish Association of Amyotrophic Lateral Sclerosis’ website to learn more about ALS, including the difference between familial and sporadic ALS and research updates.
  • Fundela – Fundela shares an incredible wealth of information on symptoms, multidisciplinary aspects of treatments for ALS, and how multidisciplinary care can improve quality of life.

Hispanic community member stories

 

Get Involved!

Send us additional Spanish-language ALS resources that we may have missed: [email protected]

 

Accessing Treatments & Trials

  • Relyvrio: While there are no written or printed resources on Relyvrio in Spanish yet, you can reach out to the Amylyx Care Team and they will work with you and a language line to provide support and information. To reach out, click here or call 866-318-2989.
  • Radicava: Learn more about Radicava and how to access it here
  • Riluzole: Learn more about Riluzole and how it could help you here.
  • Nuedexta: Learn more about Nuedexta and how it could help you here.

 

Note: I AM ALS does not offer Spanish-language support at this time. If you are seeking support in Spanish, please contact: Debbie Joy, Regional Care Manager, ALSA Golden West ([email protected], 562-741-8138).

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Have questions? Call us at 866.942.6257 between 9 a.m. - 5 p.m. or email us

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