genetics

World Down Syndrome Day

Down syndrome occurs when an individual has an extra partial (or whole) copy of chromosome 21. It is not yet know why this syndrome occurs, but Down syndrome has always been a part of the human condition. It exists in all regions across the globe and commonly results in variable effects on learning styles, physical characteristics and health.

Adequate access to health care, to early intervention programmes, and to inclusive education, as well as appropriate research, are vital to the growth and development of the individual.

In December 2011, the General Assembly declared 21 March as World Down Syndrome Day (A/RES/66/149). The General Assembly decided, with effect from 2012, to observe World Down Syndrome Day on 21 March each year. In order to raise public awareness of Down syndrome, the General Assembly invites all Member States, relevant organizations of the United Nations system and other international organizations, as well as civil society, including non-governmental organizations and the private sector, to observe World Down Syndrome Day in an appropriate manner.

To learn more about Down Syndrome Day and how to participate in 2021’s events, please visit worlddownsyndromeday.org.

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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 Education, Learning, and Literacy, please visit facebook.com/NGOCELLatUN.

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.

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