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International Alliance of ALS/MND Associations

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    • Fundamental Rights for People with ALS/MND and Caregivers
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Understanding ALS/MND Research

The following are resources submitted by Members of the International Alliance of ALS/MND Associations on the topic of Understanding ALS/MND Research.

ALS CANADA RESEARCH PROGRAM

ALS research is at a time of unprecedented excitement and momentum: there has been more progress in the last 5 to 7 years than in the last century. Many of the top ALS researchers in the world believe the scientific community is now poised to find treatments that can significantly alter the course of the disease, and that lack of funding is the only limitation standing in the way of effective ALS treatments being developed sooner rather than later.

https://www.als.ca/research/

Language: English
Subject areas: Basic and Clinical Research

BOLETINES CIENTÍFICOS DE FUNDELA

El boletín científico de FUNDELA publica resúmenes y artículos referentes a los últimos avances de la investigación, tratamientos sintomáticos y cuidados al paciente con Esclerosis Lateral Amiotrófica (ELA). Se envía periódicamente a más de 400 suscriptores, entre los que se encuentran profesionales de la salud, pacientes y familiares de España y Latinoamérica.

Todos los boletines pueden descargarse en nuestra web de forma gratuita.

http://www.fundela.es/documentacion/boletines/

Language: Spanish
Subject areas: Basic and Clinical Research

ALS TDI WEBINARS

Each month, ALS TDI brings together researchers from our lab and others for a conversation about an important topic to patients today. These can be on a specific trial, an emerging technology, or a broad theory gaining notoriety in the effort to combat ALS. These conversations are designed to ask these researchers direct questions and to provide a place where YOU and YOUR family can speak directly to those working on your behalf at ALS TDI and other labs. These webinars are recorded, but we encourage folks to join us live as your questions and interaction with these researchers is incredibly important.

https://www.als.net/als-webinars/

Language: English
Subject areas: Basic and Clinical Research

ALS THERAPY DEVELOPMENT INSTITUTE – RESEARCH CENTER

We are the world’s foremost drug discovery center focused solely on ALS. Pioneering the ‘nonprofit biotech’ model, we have placed the person with ALS at the center of every decision made in our labs. Our interdisciplinary, industry-trained team of scientists collaborate daily in our labs and through academic and pharmaceutical company partnerships across the globe to discover cures for ALS.

https://www.als.net/als-research/

Language: English
Subject areas: Basic and Clinical Research

THE MND RESEARCH INSTITUTE OF AUSTRALIA (MNDRIA)

The Motor Neurone Disease Research Institute of Australia (MNDRIA) is the research arm of MND Australia.

The MNDRIA was established in 1984 as a national organisation promoting medical and scientific research into MND. The organisation has been driven forward by the vision to understand the causes, find effective treatments and discover cures for MND.

http://www.mndaust.asn.au/Discover-our-research/Latest-research.aspx

Language: English
Subject areas: Basic and Clinical Research

RESEARCH AT THE LES TURNER ALS RESEARCH AND PATIENT CENTER AT NORTHWESTERN MEDICINE

Northwestern University Feinberg School of Medicine is known the world over for groundbreaking ALS research and the Les Turner ALS Foundation is proud to support three research laboratories here.

http://lesturnerals.org/research-initiative/

Language: English
Subject areas: Basic and Clinical Research

EUROPEAN NETWORK FOR THE CURE OF ALS (ENCALS)

ENCALS is a network of ALS centres in Europe. ALS Centre membership is open to Universities/Hospitals in Europe with ALS clinical/research activity.

https://www.encals.eu

Language: English
Subject areas: Basic and Clinical Research

PROJECT MINE

Project MinE researchers plan to map the full DNA profiles of at least 15,000 people with ALS and 7,500 control subjects, and to perform comparative analyses on the resulting data.

https://www.projectmine.com/

Language: English
Subject areas: Basic and Clinical Research, Patient Registries

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Advocacy

  • Advocacy Toolkit

  • Jean

    Jean
    jean

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

    Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • unnamed

    unnamed

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • Imelda Arenas, ACELA, Colombia

    Imelda Arenas, ACELA, Colombia

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • Liz Ogg, Diagnosed 2013 , MND Scotland, UK

    Liz Ogg, Diagnosed 2013 , MND Scotland, UK

  • Olga Cosentino, Diagnosed 2013,  Asociación ELA Argentina

    Olga Cosentino, Diagnosed 2013, Asociación ELA Argentina

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • 83

    83

  • Mark Miller

    Mark Miller

  • Philip Brindle,  MND Association,  Diagnosed 2015,  England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Brian Lovell, Diagnosed 2011 . MND Australia

    Brian Lovell, Diagnosed 2011 . MND Australia

  • Steve

    Steve

  • 727747090571358167

    727747090571358167

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Norm MacIsaac,  ALS Society of Canada,  ALS Society of Quebec,  Diagnosed 2014

    Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • Jeff Sutherland

    Jeff Sutherland
    jspic

  • Shay Rishoni, Diagnosed 2011 , Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 , Prize4Life, Israel

  • Susan Keldani, Les Turner ALS Foundation, USA

    Susan Keldani, Les Turner ALS Foundation, USA

  • Ian Roberts

    Ian Roberts

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

    Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • Mauril Bélanger, Diagnosed 2015 , ALS Canada

    Mauril Bélanger, Diagnosed 2015 , ALS Canada

  • Ismail Gokcek, Turkey

    Ismail Gokcek, Turkey
    ismail_gokcek_alsmnd_tr

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

    Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

  • Liam Dwyer, England

    Liam Dwyer, England

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Lombana, Spain

    Lombana, Spain

  • Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

    Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

  • Peng Yi-Wen

    Peng Yi-Wen

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Art Eggert, USA

    Art Eggert, USA

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

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