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Nov 24, 2021

MEPs show their support for newborn screening for World Children’s Day

World Children’s Day was first established by the United Nations in 1954 as Universal Children’s Day and is celebrated on 20 November each year to promote international togetherness, awareness among children worldwide, and improving children’s welfare.

November 20th is an important date as it is the date in 1959 when the UN General Assembly adopted the Declaration of the Rights of the Child. It is also the date in 1989 when the UN General Assembly adopted the Convention on the Rights of the Child.

To mark this day, Novartis Gene Therapies supported the creation of these videos with Members of the European Parliament. Novartis Gene Therapies is a member of the SMA NBS Alliance.

Dr. Stelios Kympouropoulos an MEP from Greece has also been a supporter of our Alliance since its founding. In this short video statement, he talks about how a treatment’s effectiveness can be linked to the age when the person receives the treatment.

Mr. Cyrus Engerer is an MEP from Malta who is a supporter of the SMA NBS Alliance and spoke at the launch event of the SMA NBS Whitepaper. Click below to watch his video message.

The Alliance feels that it is unacceptable that the chances of a child being diagnosed early and then having the opportunity of timely treatment for a devastating disease, where damage to health can be lifelong and irreversible, is determined by where they are born in Europe.

Let’s change that together and bring newborn screening for spinal muscular atrophy to all newborn children in Europe.