International Alliance of ALS/MND Associations

Resources

The International Alliance of ALS/MND Associations has created this resource guide to help people interested in ALS/MND find information about the disease, care and research in their home country and language.

The Alliance has not evaluated all the information contained on sites listed here and in some cases has not checked that the links are currently operable. These resources are listed because trusted Alliance Members have recommended them. However, the Alliance cannot take responsibility for the information provided on external websites accessed through this resource guide.

Are you an Alliance Member with a resource that might be useful to others?

Submit resource here

À propos de la SLA

www.als.ca/fr/propos-de-la-sla/
Topic: What Is ALS/MND?
Language: French

About ALS

www.feinberg.northwestern.edu/sites/alsresearch/about-als/index.html
Topic: What Is ALS/MND?
Language: English

About MND

mnda.org.nz/about-mnd/
Topic: What Is ALS/MND?
Language: English

Alper Kaya: Living with ALS/MND in Turkey

turkals.blogspot.com.tr/
Topic: Patient Networks, Online Support Groups, Blogs
Language: English | Turkish

ALS Assistive Technology Blog

alsassistivetechnology.blogspot.com
Topic: Equipment, Communications and Assistive Technology
Language: English

ALS Canada Research Program

www.als.ca/research/
Topic: Basic and Clinical Research
Language: English

ALS Care Nurses (Switzerland)

www.als-schweiz.ch/de/fachpersonen-portal/als_care_nurses/
Topic: For Families and Caregivers
Language: German

ALS Care Training

www.als-schweiz.ch/de/vernetzung/als_care_training/
Topic: For Clinicians , For Families and Caregivers
Language: German

ALS Centrum Nederland

www.als-centrum.nl/
Topic: Basic and Clinical Research , For Clinicians , For Families and Caregivers , Navigating Healthcare Systems , What Is ALS/MND?
Language: Dutch

ALS Clinical Trials (ALS TDI)

www.als.net/als-research/als-clinical-trials/
Topic: Basic and Clinical Research
Language: English

ALS Forum

www.als.net/forum/
Topic: Patient Networks, Online Support Groups, Blogs
Language: English

ALS Patients Connected

www.alspatientsconnected.com
Topic: Patient Networks, Online Support Groups, Blogs
Language: Dutch

ALS Research Forum

www.alsresearchforum.org
Topic: Basic and Clinical Research , For Clinicians
Language: English

ALS TDI Webinars

www.als.net/als-webinars/
Topic: Basic and Clinical Research
Language: English

ALS Therapy Development Institute – Research Center

www.als.net/als-research/
Topic: Basic and Clinical Research
Language: English

ALS Untangled

alsuntangled.com
Topic: Basic and Clinical Research
Language: English

ALS-Diagnose: Was nun?

www.als-schweiz.ch/de/als-diagnose_was_nun/
Topic: For Families and Caregivers , What Is ALS/MND?
Language: German

ALS-MNH Hakkında Sık Sorulan Sorular

www.als.org.tr/als-mnh-hakkinda-sik-sorulan-sorular
Topic: What Is ALS/MND?
Language: Turkish

ALS-MNH Nedir

www.als.org.tr/als-mnh-nedir-1
Topic: What Is ALS/MND?
Language: Turkish

ALS-Selbsthilfe

www.als-selbsthilfe.de
Topic: For Families and Caregivers , Patient Networks, Online Support Groups, Blogs
Language: German

Amyotrophe Lateralsklerose (ALS)

www.dgm.org/muskelerkrankungen/amyotrophe-lateralsklerose-als
Topic: What Is ALS/MND?
Language: German

Boletines Científicos de FUNDELA

www.fundela.es/documentacion/boletines/
Topic: Basic and Clinical Research
Language: Spanish

C’est quoi la SLA?

als.be/nl/Wat-is-ALS
Topic: What Is ALS/MND?
Language: French

Carers Hub

www.mndassociation.org/for-carers/
Topic: Care and Support Guides and Manuals , For Families and Caregivers , For Youth and Children
Language: English

Child Friendly Resources

www.mnd.asn.au/understanding-mnd/child-friendly-resources
Topic: For Youth and Children
Language: English

European Network for the Cure of ALS (ENCALS)

www.encals.eu
Topic: Basic and Clinical Research
Language: English

For Family and Friends

www.mndaust.asn.au/Get-informed/For-family-and-friends.aspx
Topic: For Families and Caregivers
Language: English

FYI: Informational factsheets and articles to help in living with ALS

www.alsa.org/als-care/resources/publications-videos/factsheets/
Topic: Basic and Clinical Research , Care and Support Guides and Manuals , Equipment, Communications and Assistive Technology , For Families and Caregivers , Navigating Healthcare Systems
Language: English

G.E.R.A.L.D.S.: Ein Netzwerk für ALS-Fachpersonen

www.als-schweiz.ch/de/fachpersonen-portal/g.e.r.a.l.d.s./
Topic: For Clinicians
Language: German

G.E.R.A.L.D.S.: Réseau pour les professionnels

www.sla-suisse.ch/fr/reseau_g.e.r.a.l.d.s/
Topic: For Clinicians
Language: French

Guias de Ayuda: Guias Para Cuidadores

www.asociacionela.org.ar/index.php/la-ela/guias-de-ayuda/guias-para-cuidadores
Topic: For Clinicians , For Families and Caregivers
Language: Spanish

Guias de Ayuda: La Familia y la ELA

www.asociacionela.org.ar/images/stories/PDF/YouthFamilies.pdf
Topic: Care and Support Guides and Manuals , For Families and Caregivers , For Youth and Children
Language: Spanish

Guias de Ayuda: Vivir con ELA (MND)

www.asociacionela.org.ar/index.php/la-ela/guias-de-ayuda/vivir-con-ela-mnd
Topic: Care and Support Guides and Manuals , For Families and Caregivers
Language: Spanish

Hola, Soy Ana Victoria Sanz Y Tengo ELA Blog – Venezuela

ela-esclerosislateralamiotrofica.blogspot.com
Topic: Patient Networks, Online Support Groups, Blogs
Language: Spanish

Información General Sobre ELA

www.fundela.es/ela/informacion-general/
Topic: What Is ALS/MND?
Language: Spanish

Information brève sur la sclérose latérale amyotrophique (SLA)

www.sla-suisse.ch/fr/quest-ce_que_la_sla/image_de_la_maladie/
Topic: What Is ALS/MND?
Language: French

Information for Professionals

www.mndassociation.org/forprofessionals/
Topic: For Clinicians
Language: English

Information in Other Languages (MND Association)

www.mndassociation.org/about-mnd/information-resources/information-in-other-languages/
Topic: Care and Support Guides and Manuals , For Families and Caregivers
Language: Arabic | Bengali | Bulgarian | Chinese (Simplified) | Chinese (Traditional) | Gujarati | Korean | Mandarin | Polish | Portuguese | Punjabi | Romanian | Russian | Slovak | Somali | Spanish | Tamil | Turkish | Urdu | Welsh

Kommhelp

www.kommhelp.de/
Topic: Equipment, Communications and Assistive Technology
Language: German

La ELA Existe Blog – Venezuela

laelaexisteenvenezuela.blogspot.com
Topic: Patient Networks, Online Support Groups, Blogs
Language: Spanish

La ELA y Enrry Blog

enrrylloverablogspotcom.blogspot.com
Topic: Patient Networks, Online Support Groups, Blogs
Language: Spanish

La malattia & la nuova diagnosi

www.aisla.it/la-malattia-la-nuova-diagnosi/
Topic: What Is ALS/MND?
Language: Italian

Le diagnostic SLA : Que faire maintenant ?

www.sla-suisse.ch/fr/le_diagnostic_sla_que_faire_maintenant/
Topic: For Families and Caregivers , What Is ALS/MND?
Language: French

Leben mit ALS

www.als-schweiz.ch/de/leben_mit_als/
Topic: Care and Support Guides and Manuals , For Families and Caregivers
Language: German

Living with ALS Resource Guides

www.alsa.org/als-care/resources/publications-videos/resource-guides/
Topic: Care and Support Guides and Manuals , For Families and Caregivers , Navigating Healthcare Systems
Language: English

Living with ALS: Resources

www.als.ca/about-als/resources/living-with-als/
Topic: Care and Support Guides and Manuals , For Families and Caregivers
Language: English

Living with MND

www.mnd.asn.au/understanding-mnd/living-with-mnd
Topic: Care and Support Guides and Manuals , For Families and Caregivers
Language: English

Living with MND

www.mndassociation.org/about-mnd/living-with-mnd/
Topic: Care and Support Guides and Manuals , Equipment, Communications and Assistive Technology , For Families and Caregivers
Language: English

Medical Information and Materials

www.alsa.org/als-care/resources/publications-videos/medical-information-packet/
Topic: For Clinicians
Language: English

Medicare Information (United States)

www.alsa.org/als-care/resources/medicare-information.html
Topic: Navigating Healthcare Systems
Language: English

MND Care

www.mndcare.net.au/Home.aspx
Topic: Care and Support Guides and Manuals , For Clinicians , Navigating Healthcare Systems
Language: English

MND Félagið Íslandi

www.mnd.is/index.php?option=com_content&view=article&id=95&Itemid=591
Topic: Other , What Is ALS/MND?
Language: Icelandic

MND Research Blog

mndresearch.wordpress.com
Topic: Basic and Clinical Research
Language: English

MND Research Newsletter

www.mndassociation.org/research/mnd-research-and-you/mnd-research-newsletter/
Topic: Basic and Clinical Research
Language: English

National ALS Registry (USA)

www.pva.org/research-resources/national-als-registry
Topic: Patient Registries
Language: English

NEALS (Northeast ALS Consortium)

www.neals.org
Topic: Basic and Clinical Research
Language: English

Noticias y Artículos de Apoyo Integral Gila, AC

www.ela.org.mx/noticias/latest.html
Topic: Basic and Clinical Research
Language: Spanish

Paralleltreffen für Betroffene und Angehörige (Switzerland)

www.als-schweiz.ch/de/vernetzung/paralleltreffen/
Topic: For Families and Caregivers , Patient Networks, Online Support Groups, Blogs
Language: German

Pour les jeunes

www.als.ca/fr/propos-de-la-sla/ressources/pour-les-jeunes/
Topic: For Families and Caregivers , For Youth and Children
Language: French

Pour les médecins

www.als.ca/fr/propos-de-la-sla/ressources/pour-les-medecins/
Topic: For Clinicians
Language: French

Professor Stephen Hawking

www.hawking.org.uk
Topic: Patient Networks, Online Support Groups, Blogs
Language: English

Project MinE

www.projectmine.com/
Topic: Basic and Clinical Research , Patient Registries
Language: English

Qué Es ELA?

www.ela.org.mx/que-es-la-ela.html
Topic: What Is ALS/MND?
Language: Spanish

Qué es la ELA?

www.asociacionela.org.ar/index.php/la-ela/queeslaela
Topic: What Is ALS/MND?
Language: Spanish

Research at the Les Turner ALS Research and Patient Center at Northwestern Medicine

lesturnerals.org/research-initiative/
Topic: Basic and Clinical Research
Language: English

Resources for Physicians

www.als.ca/about-als/resources/for-physicians/
Topic: For Clinicians
Language: English

Resources for Youth

www.als.ca/about-als/resources/for-youth/
Topic: For Families and Caregivers , For Youth and Children
Language: English

The ALS Association: Research News

www.alsa.org/research/research-news/
Topic: Basic and Clinical Research
Language: English

The MND Research Institute of Australia (MNDRIA)

www.mndaust.asn.au/Discover-our-research/Latest-research.aspx
Topic: Basic and Clinical Research
Language: English

Vivre avec la SLA

www.als.ca/fr/propos-de-la-sla/ressources/vivre-avec-la-sla/
Topic: Care and Support Guides and Manuals , For Families and Caregivers
Language: French

Vivre avec la SLA

www.sla-suisse.ch/fr/vivre_avec_la_sla/
Topic: Care and Support Guides and Manuals , For Families and Caregivers
Language: French

Was ist ALS?

www.als-schweiz.ch/de/was_ist_als/krankheitsbild/
Topic: What Is ALS/MND?
Language: German

Wat is ALS?

www.als.nl/wat-is-als/
Topic: What Is ALS/MND?
Language: Dutch

Wat Is ALS? Copy

als.be/nl/Wat-is-ALS
Topic: What Is ALS/MND?
Language: Dutch

What is ALS?

www.als.net/what-is-als/
Topic: What Is ALS/MND?
Language: English

What is ALS?

www.alsa.org/about-als/what-is-als.html
Topic: What Is ALS/MND?
Language: English

What is ALS?

www.als.ca/about-als/
Topic: What Is ALS/MND?
Language: English

What is ALS?

lesturnerals.org/what-is-als/
Topic: What Is ALS/MND?
Language: English

What is MND?

www.mndassociation.org/what-is-mnd
Topic: What Is ALS/MND?
Language: English

What is motor neurone disease (Arabic)?

www.mnd.asn.au/images/QMS-docs/Other-languages/Arabic.pdf
Topic: What Is ALS/MND?
Language: Arabic

What is motor neurone disease (Chinese)?

www.mnd.asn.au/images/QMS-docs/Other-languages/Chinese.pdf
Topic: What Is ALS/MND?
Language: Chinese (Simplified) | Chinese (Traditional)

What is motor neurone disease (Croatian)?

www.mnd.asn.au/images/QMS-docs/Other-languages/Croatian.pdf
Topic: What Is ALS/MND?
Language: Croatian

What is motor neurone disease (Greek)?

www.mnd.asn.au/images/QMS-docs/Other-languages/Greek.pdf
Topic: What Is ALS/MND?
Language: Greek

What is motor neurone disease (Hindi)?

www.mnd.asn.au/images/QMS-docs/Other-languages/Hindi.pdf
Topic: What Is ALS/MND?
Language: Hindi

What is motor neurone disease (Italian)?

www.mnd.asn.au/images/QMS-docs/Other-languages/Italian.pdf
Topic: What Is ALS/MND?
Language: Italian

What is motor neurone disease (Korean)?

www.mnd.asn.au/images/QMS-docs/Other-languages/Korean.pdf
Topic: What Is ALS/MND?
Language: Korean

What is motor neurone disease (Polish)?

www.mnd.asn.au/images/QMS-docs/Other-languages/Polish.pdf
Topic: What Is ALS/MND?
Language: Polish

What is motor neurone disease (Serbian)?

Topic: What Is ALS/MND?
Language: Serbian

What is motor neurone disease (Spanish)?

www.mnd.asn.au/images/QMS-docs/Other-languages/Spanish.pdf
Topic: What Is ALS/MND?
Language: Spanish

What is motor neurone disease (Thai)?

Topic: What Is ALS/MND?
Language: Thai

What is motor neurone disease (Turkish)?

www.mnd.asn.au/images/QMS-docs/Other-languages/Turkish.pdf
Topic: What Is ALS/MND?
Language: Turkish

What is motor neurone disease (Vietnamese)?

www.mnd.asn.au/images/QMS-docs/Other-languages/Vietnamese.pdf
Topic: What Is ALS/MND?
Language: Vietnamese

What is motor neurone disease?

www.mnd.asn.au/understanding-mnd/what-is-mnd
Topic: What Is ALS/MND?
Language: English

מהי מחלת ALS

israls.org.il/מהי-מחלת-als/
Topic: What Is ALS/MND?
Language: Hebrew

认识ALS – About ALS

www.jiandongren.org/als/als.aspx
Topic: What Is ALS/MND?
Language: Chinese (Simplified)

 

 

CALL FOR AWARD NOMINATIONS

The International Alliance of ALS/MND Associations will present The Forbes Norris Award, The Humanitarian Award, and The Allied Health Professional Award to recognize excellence in the ALS/MND community during the opening ceremony of the Symposium 4 December.

Please click here for more details about each of these awards.

The deadline to nominate an individual for each of these awards is 1 October 2019.

Click here to nominate a Neurologist for The Forbes Norris Award

Click here to nominate an ALS/MND Advocate for The Humanitarian Award

Click here to nominate a Health Care Professional for the Allied Health Professional Award