disabilities

Call for a UN Resolution on Persons Living with a Rare Disease and their Families

The global rare disease community is calling for a UN Resolution Addressing the Needs of Persons and Families Living with a Rare Disease (PLWRD).

Over 300 million people worldwide live with one of over 6,000 identified rare diseases. Rare diseases are often chronic, complex, disabling and life threatening. Persons and families living with a rare disease confront a lack of public awareness as well as a paucity of expertise and knowledge of rare diseases, exposing them to greater social, health and economic vulnerability.

To ensure the well-being of persons living with a rare disease, RDI in partnership with EURORDIS and the NGO Committee for Rare Diseases, is a calling a UN Resolution that recognizes the complex needs of persons living with a rare diseases and promotes the human rights and full participation in society of all people.

Register here!

Preliminary Agenda:

  • Welcome from Rare Diseases International
  • Official Rare Disease Day 2021 Video
  • Opening Remarks from the NGO Committee for Rare Diseases
  • Call for a UNGA Resolution on Rare Diseases
  • Testimonies from Person’s Living with a Rare Disease around the world
  • Video – Rare Diseases at the United Nations
  • Panel Discussion: “Why a UN Resolution and Why Now”
  • Message from International Rare Disease Champion
  • UN Member States Support
  • Key take home message and next steps

Key Asks for the UN Resolution on Rare Diseases would include:

1. Inclusion and participation of PLWRD & their families in society and respect of their human rights

2. Improvement of health and social outcomes with the appropriate care and support within existing resources

3. Promotion of national strategies and actions

4. Introduction of rare diseases into UN agencies and programmes

5. Regular reports by the UN Secretariat to monitor the progress on the implementation.

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CoNGO Notes: For more information on the NGO Committee for Rare Diseases, please visit ngocommitteerarediseases.org. For more information on the NGO Committee on the Rights of Indigenous Peoples, please visit facebook.com/NGOCoRIP. For more information on the NGO Committee on Social Development, please visit ngosocdev.org.

{Webinar} COVID-19, Amplifying Voices:  Our Lives, Our Say

The NGO Committee on Ageing calls your attention to a webinar on “COVID-19, Amplifying Voices:  Our lives, our say” being organized by the World Blind Union (WBU) on Friday, 4 September 2020 from 9:00 a.m. to 10:15 a.m. EST


The aim of the webinar is to share the findings of a study conducted by the World Blind Union (WBU)examining the extent to which COVID-19 pandemic has exposed some deep structural inequalities in society. Data gathered from the study is evidencing that persons with disabilities, older persons, and persons from lower socioeconomic status backgrounds are among those hardest hit by the pandemic. While this report puts a spotlight on the voices of blind and partially sighted persons, many of the experiences shared strongly resonate with numerous other studies that are also highlighting how marginalised groups have been affected by this crisis. Through this report, WBU hopes to raise awareness on the specifics of what those challenges have meant in reality for its constituents, as well as shed light on what have been effective resilience strategies for them. The study was made possible with the support of CBM Global.

Panellists will include:

  • Ms. Maria Soledad Cisternas Reyes, the UN Special Envoy on Disability and Accessibility;
  • Mr. David Bainbridge, the Executive Director of CBM Global;
  • Mr. Danlami Umaru Basharu, Chairperson of the Committee on the Rights of Persons with Disabilities (CRPD);
  • Ms. Rosario Galarza, member of the Executive Committee of Latin American Union of the Blind; and
  • Dr. Fred Schroeder,WBU President.

The webinar will be moderated by Mr. Jose Viera, Chief Executive Office, WBU.

REGISTER HERE:  https://geneva-academy-ch.zoom.us/webinar/register/WN_CSD5yzvFTxSBwSuFCINSKg

Accessibility: Realtime captioning and International Sign Language will be provided. The webinar will be available in English, French and Spanish.

The webinar will be broadcast live on WBU Facebook: https://www.facebook.com/BlindUnion

The study report is available in various accessible formats and languages  at http://www.worldblindunion.org/English/resources/Pages/General-Documents.aspx

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CoNGO Notes: CoNGO and its substantive committees are actively working on issues related to ageing, older persons and intergenerational solidarity. For more information: NGO Committee on Ageing – Geneva, please visit ageingcommitteegeneva.org.  NGO Committee on Ageing – New York, please visit www.ngocoa-ny.org.  NGO Committee on Ageing – Vienna, please visit ngoageingvie.orgNGO Committee on Intergenerational Solidarity, email the Chair, Rosa Perla Resnick at  rositaresnick@yahoo.com or the Vice Chair, Susanne Seperson at susanneseperson@gmail.com.

[Virtual Side Event] Catalysing action at the frontlines to support transformative pathways

HLPF virtual side event: Catalysing action at the frontlines to support communities to achieve transformative pathways in the decade of action, delivery and accountability

Global Call to Action Against Poverty (GCAP)

Co-Organizers: Republic of Korea UN SDG Action Campaign Action for Sustainable Development, CIVICUS, Project Everyone, Save the Children, HelpAge, Action Aid

Register here now: https://sustainabledevelopment.un.org/index.phppage=view&type=20000&nr=7094&menu=2993

This year is the first year of the Decade of Action, but the impact of Covid-19 has led to massively increased challenges to delivery of the promises of transformation, more than 500 civil society groups came together in a Global Day of Solidarity to highlight that we are #StrongerTogether on 22 May. This coalition will consider:

  • Key examples of community groups that are stepping up to deliver the SDGs and respond to the Covid-19 crisis
  • The impact of Covid-19 on the SDGs
  • Lessons learned and opportunities to build grassroots momentum for the Decade of Action

 

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CoNGO Notes: For more information on the NGO Committee on Sustainable Development-Vienna, visit ngocsdvienna.org. For more information on the NGO Committee on Migration, please visit ngo-migration.org. For more information on the NGO Committee on Mental Health, please visit ngomentalhealth.org.

[Virtual HLPF Side Event] Stakeholder Group on Ageing: Delivering SDGs for Older Persons & Persons with Disabilities Post COVID-19

COVID-19 is exposing and deepening the inequalities, discrimination and ageism that older persons and persons with disabilities experience every day. We need inclusive programmes and policies that address the rights of people of all ages to ensure we leave no one behind. This official side event to the 2020 High-Level Political Forum on Sustainable Development will look at the COVID-19 experience to identify learnings and opportunities to build a more age and disability-inclusive world, and accelerate action to achieve the SDGs for all.
Speakers include:
• Ms. Claudia Mahler, Independent Expert on the enjoyment of all human rights by older persons
• Dr. Alex Kalache, President of the International Longevity Centre-Brazil
After registering, you will receive a confirmation email containing information about joining the meeting. For more information, please contact mariana.rudge@helpage.org
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CoNGO Notes: CoNGO and its substantive committees are actively working on issues related to ageing, older persons and intergenerational solidarity. For more information: NGO Committee on Ageing – Geneva, please visit ageingcommitteegeneva.org.  NGO Committee on Ageing – New York, please visit www.ngocoa-ny.orgNGO Committee on Ageing – Vienna, please visit ngoageingvie.org. NGO Committee on Intergenerational Solidarity, email the Chair, Rosa Perla Resnick at  rositaresnick@yahoo.com or the Vice Chair, Susanne Seperson at susanneseperson@gmail.com.