childhood

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

[Civil Society Briefing] “Childhood After Atrocity Crimes: Hope for Peace, Dignity and Equality”

Civil Society Briefing “Childhood after Atrocity Crimes: Hope for Peace, Dignity and Equality”

Register here: bit.ly/39Kzaau

Experts examine the approaches taken to support children who survived the Holocaust and consider how these approaches contributed to models adopted for contemporary practice for working with young people who have survived atrocity crimes.

The briefing is organized by the Outreach Programme on the Holocaust and the Civil Society Unit of the United Nations Department of Global Communications.

SPEAKERS

Ms. Hawa Diallo, Chief, Civil Society Unit, Department of Global Communications

Dr. Beth B. Cohen, Social Historian and Author

Professor Theresa S. Betancourt, Boston College School of Social Work

Ms. Divina Maloum, Founder, Children for Peace

POEM

Lament of Syria

by Ms. Amineh Abou Kerech, Winner, Betjeman Poetry Prize 2017

For more information about the 2021 Holocaust Remembrance please visit: https://www.un.org/holocaustremembrance

If you have questions please contact: education-outreach@un.org

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CoNGO Notes: For more information on the NGO Committee on Children’s Rights, please visit childrightsny.org. For more information on the NGO Committee on Human Rights, please email the co-chairs at bknotts@uua.org or bobbinassar@gmail.com. For more information on the NGO Committee on Freedom of Religion or Belief, please visit unforb.org.