rare diseases

On the road towards COVID-19 recovery and delivery of the SDGs: Addressing the challenges of persons living with a rare disease as a human rights, sustainable development and equity priority

On the road towards COVID-19 recovery and delivery of the SDGs: Addressing the challenges of persons living with a rare disease as a human rights, sustainable development and equity priority

Overview:

The 300 million persons living with a rare disease around the world and their families face common challenges in all aspects of their daily lives. As they experience different levels of vulnerability, they are disproportionally affected by stigma, discrimination and marginalization, within their own social environment and in society at large. Knowledge and information are scarce and expertise is not accessible. Stigma, discrimination, lack of awareness and recognition lead to specific challenges in access to education, healthcare, employment and leisure. The impact is felt throughout their lives, causing increased impoverishment and isolation for individuals and their families. These socioeconomic challenges have been worsened by the current Covid-19 pandemic and will not diminish post-COVID-19 unless specific attention is paid to them. In the context of the decade of action and delivery for sustainable development, it is critical to acknowledge how the specific challenges of persons living with a rare disease are at the heart of the 2030 Agenda and present many synergies with the Sustainable Development Goals (SDGs), including goals 1, 3, 8 and 10, which are under review at the High-Level Political Forum 2021. Persons living with a rare disease therefore require immediate and urgent attention, under the auspices of global and national policies that address their needs and respect their human rights. Indeed, unless persons living with a rare disease are explicitly included we cannot ensure that ‘no one is left behind.’

Objective of the event:

The side-event to the High Level Political Forum 2021 has the objective to showcase how addressing the challenges of persons living with a rare disease, recognizing their rights, needs and priorities, as well as promoting their active participation, and harnessing the opportunities for their inclusion in society is essential to the realisation of the 2030 Agenda and to the sustainable recovery from the COVID-19 pandemic. The rare disease civil society community (represented by the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS-Rare Diseases Europe) with the support of a number of UN Member States including Spain, Brazil and the State of Qatar, proposes to discuss, at the event, the adoption of a UN General Assembly Resolution that can act as a catalyst and provide a constructive and consensual intergovernmental vision on the issue.

Register here: us02web.zoom.us/webinar/register/WN_06nqC4E0S_ifw75SoKQDiw

Agenda: rarediseasesinternational.org/wp-content/uploads/2021/07/Final-Programme-UN-HLPF-Event.pdf

Concept Note: rarediseasesinternational.org/wp-content/uploads/2021/07/Concept-Note-HLPF-side-event-2021_Persons-rare-diseases_Final.pdf

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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 Human Rights, please email the co-chairs at bobbinassar@gmail.com or bknotts@uua.org. For more information on the NGO Committee on Sustainable Development-NY, please visit ngocsd-ny.org. For more information on the NGO Committee on Sustainable Development-Vienna, please visit ngocsdvienna.org.

Compassion, Commitment, and Innovation: A Symposium on Onchocerciasis Control in Africa

Bruce Benton’s book, Riverblindness in Africa: Taming the Lion’s Stare (2020), documents the origins, stories, successes, and challenges of controlling, and eventually eliminating, onchocerciasis, a widespread and debilitating disease in Africa. This event probes dimensions of the human side of the onchocerciasis-control story, including the role of compassion and the importance of trust. It examines how compassion, commitment, and innovation, which have been central to the long-term success of onchocerciasis control, can lead to completion of that effort in Africa.

Register here: https://georgetown.zoom.us/webinar/register/WN_fZyB5O3yR3asKzMfU38JCQ

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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 Social Development, please visit ngosocdev.org.

Rare Disease Day 2021

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Explore and participate in events happening around the world in honor of Rare Disease Day here!

The official Rare Disease Day 2021 video is available in 36 languages, kicking off the international patient-led movement that puts rare diseases in the spotlight. 6 continents, 6 portraits, 6 heroes, 6 lives. The official Rare Disease Day video shines a light on the global and wide community of 300 million people and over 6000 rare diseases.

What are Rare Diseases?

There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world1, each supported by family, friends and a team of carers that make up the rare disease community.

Each rare disease may only affect a handful of people, scattered around the world, but taken together the number of people directly affected is equivalent to the population of the world’s third largest country.

Rare diseases currently affect 3.5% – 5.9% of the worldwide population.

72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 70% of those genetic rare diseases start in childhood. A disease defined as rare in Europe when it affects fewer than 1 in 2,000 people.

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CoNGO Notes: For more information on the NGO Committee for Rare Diseases, please visit ngocommitteerarediseases.org. 

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.

[UNESCO Webinar] ESD and Climate Emergency: ‘Bend the curve for climate change’

Education has been recognized as a crucial element to counter climate change and is one of the priority areas of Action for Climate Empowerment (ACE). Education contributes to raising awareness on the physical mechanisms and the emergency of climate change and its impacts. More specifically, Education for Sustainable Development empowers people to take action by promoting values, problem solving and critical thinking skills needed for sustainable development.

But, concretely, how can and does this happen in different settings? How can Education for Sustainable Development contribute to urgent action for green and sustainable societies in light of the climate emergency? What can we learn from the Covid-19 pandemic on how to educate and act in times of crisis?

Register here. Read more about this event hosted by UNESCO here. 

Speakers & topics include:

Next steps on Action for Climate Empowerment

  • Ms. Fleur Newman, Action Empowerment Unit Lead, UNFCCC

Empowering young people and women in climate action

  • Ms. Menna Mosbah, Youth activist, Arab region ESD Youth network, Egypt

Developing Climate-Friendly Schools

  • Mrs. Meryem Khodari, The Hassan II International Center for Environmental training – Mohammed VI Foundation

Where we are and where to go: recent data on Climate Change Education

  • Dr. Marcia McKenzie, University of Saskatchewan, Canada

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CoNGO Notes: For more information on the NGO Committee on Sustainable Development-NY, please visit ngocsd-ny.org. For more information on the NGO Committee on Sustainable Development-Vienna, please visit ngocsdvienna.org. For more information on the NGO Committee on Education, Learning, and Literacy, please visit facebook.com/NGOCELLatUN. For more information on the NGO Committee for Rare Diseases, please visit ngocommitteerarediseases.org. 

Transforming Agrifood Systems and Fostering Inclusive Rural Development in the Context of COVID-19 to End Rural Poverty

FAO, IFAD, WFP, UN DESA, in collaboration with the Permanent Mission of China to the UN and the Delegation of the European Union to the UN, invite you to the side-event in the context of the UN General Assembly special session in response to COVID-19

This side event will analyze the economic, social and environmental potential of an inclusive process of agrifood system transformation for the eradication of rural poverty and achievement of the Sustainable Development Goals. Looking towards the 2021 UN Food Systems Summit, the discussion will highlight the holistic nature of the 2030 Agenda, and the strong interlinkages between the Sustainable Development Goals, their targets and the entire 2030 Agenda.

Register here.

For more information, please visit: un.org/development/desa/dspd/2020/11/end-rural-poverty.

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CoNGO Notes: For more information on the NGO Committee on Financing for Development, please visit ngosonffd.org. For more information on the NGO Committee on Sustainable Development-New York, please visit ngocsd-ny.org. For more information on the NGO Committee on Sustainable Development-Vienna, please visit ngocsdvienna.org. For more information on the NGO Committee for Rare Diseases, please visit ngocommitteerarediseases.org. 

[UN Observance] World AIDS Day

Every year on December 1, the United Nations commemorates World AIDS Day. This year, the onset of COVID-19 has shone a glaring light on how much works remains to be done when it comes to saving lives threatened by deadly diseases. To learn more about World AIDS Day and how you can help end the stigma, check out who.int/westernpacific/news/events/world-aids-day.

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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 Committee of Religious NGOs at the United Nations, please visit rngos.wordpress.com. 

Impact of COVID-19 on Rare Disease Research, Digital Health, Drug Development and Access

Join us for the session ‘The impact of the Covid-19 global pandemic on rare disease research, digital health, drug development and access‘ as part of the World Orphan Drug Congress happening virtually 2-5 November 2020.
This session is part of the World Orphan Drug Congress, a congress featuring leading orphan drug leaders bringing you presentations, interactive sessions and networking opportunities.
We’d love for you to take part with a complimentary pass – Secure your spot here – use the code VIPPASS to get your ticket.
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CoNGO Notes: For more information on the NGO Committee on Rare Diseases, please visit ngocommitteerarediseases.org. For more information on the NGO Committee on Mental Health, please visit ngomentalhealth.org. 

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