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Fundamental Rights of People with ALS/MND

Aims and Focus of the 2016 Global Day Campaign

Every day, members of the Alliance work together to improve the quality of life and care available to people with ALS/MND worldwide. We recognise that people with ALS/MND all over the world have fundamental rights, including the right to access the best care available.

Over the last year, members of the Alliance and our Board of Directors have worked hard to update a special advocacy document naming and supporting The Fundamental Rights of People with ALS/MND Worldwide. This is one of the Alliance’s core position statements.

This rights document was updated, revised and finalized in April 2016. Although some of the conditions we list might not be immediately attainable, they represent the set of rights all associations, governments and healthcare systems should promote and aspire to. These rights are aspirational for people with ALS/MND across the globe.

As a first step, we have invited all of our member associations – representing more than 35 countries worldwide – to offer official endorsement of our fundamental rights document. As each association offers this endorsement, we add their logo to the document as a visual representation of support from around the world. As of early June 2016, we’ve already added more than 15 member logos!

Our goal is to have as many supporters as possible by Global Day 2016. The more associations that declare their support for the rights of people with ALS/MND, the stronger this document becomes as a tool for advocacy on the local, regional and global levels. This document also supports our members’ existing campaigns related to the rights of people with ALS/MND.

Show your support: read, share and endorse the fundamental rights of people with ALS/MND!

Objectives

  1. To engage members and create solidarity in the ALS/MND community through a coordinated Global Day campaign.
  2. To promote the rights of people living with ALS/MND worldwide and to encourage member associations to advocate for these rights.
  3. To create and share key messages that raise ALS/MND awareness worldwide.

How Members Can Get Involved

It’s easy for member associations to get involved! Read the document here. Then bring the document to your Board of Directors for official approval. Once you are ready to lend your association’s endorsement, email our General Manager with your logo, and she will add it to the page.

Individuals and non-members can also participate by simply sharing this document via social media and advocating on behalf of people with ALS/MND.

On and around 21 June, we will promote this document and the associations that have lent their support. Share our posts and Tweets! We will use our advocacy hashtag #ALSMNDWithoutBorders; we are proud that members from all parts of the world can endorse this document across borders.

We also encourage all members to promote the fundamental rights of people with ALS/MND via their own social media messages on 21 June. Don’t forget to tag @alsmndalliance on Twitter!

Key Message

#ALSMNDWithoutBorders:
United in advocating for people with ALS/MND worldwide

Primary Sidebar

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Erwin Coppejans, Diagnosed 2007 - ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

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

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

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

  • Ian Roberts

    Ian Roberts

  • Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

  • Ailsa Malcolm-Hutton, Diagnosed 2013 - MND Association of England, Wales and N Ireland

    Ailsa Malcolm-Hutton, Diagnosed 2013 – MND Association of England, Wales and N Ireland

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Danny Reviers, Diagnosed 1979 - ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

  • Susan Anderson, Diagnosed 2014 - Hope Loves Company, USA

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

    Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Angie Bordaen, Diagnosed 2014 - ALS Liga België, Belgium

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

  • Charlie “Hark” Dourney, Diagnosed 2007 - Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 – Hark ALS, USA

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

    Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

  • Margreth Burger-Saile, Diagnosed 2011 - ALS Schweiz, Switzerland

    Margreth Burger-Saile, Diagnosed 2011 – ALS Schweiz, Switzerland

  • Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

  • Osiel Mendoza, Diagnosed 2016 - ALS Therapy Development Institute, USA

    Osiel Mendoza, Diagnosed 2016 – ALS Therapy Development Institute, USA

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Josée Kolijn-de Man, Diagnosed 2015 - ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 – ALS Patients Connected, The Netherlands

  • Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

    Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

  • Steven Spencer, Diagnosed 2014 - MND New Zealand

    Steven Spencer, Diagnosed 2014 – MND New Zealand

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

Learn more about the March of Faces

Past Campaigns

  • 2017: The ALS/MND Cheers Challenge
  • 2016: Rights of People with ALS/MND
  • 2015: ALS/MND Without Borders
  • 2014: One Global Team, One Goal
  • 2013: Global Charter

Allied Professionals Forum Registration

The International Alliance of ALS/MND Associations will host a virtual Allied Professionals Forum spread over two days to accommodate time zones on 3 – 4 December 2020.

Click here to register for the Allied Professionals Forum

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Latest Tweets

  • Our friends from @MND_RIA @KingsCollegeLon @BostonChildrens may want to tune in to hear @CEBirks @AmmarAlChalabi an… https://t.co/gu8X4gTfC8 Yesterday at 8:08 pm
  • Join us on March 4th for the Alliance's first Webinar of 2021: "Sharing Success: Fireside Chat with Award Winners" - https://t.co/PrfTYt1Q5Z Yesterday at 4:59 pm
  • The International Society for Frontotemporal Dementias is hosting their International Conference next week March 3-… https://t.co/ZhyToPGr2U Yesterday at 2:20 pm

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