At Cure Rett Canada, our mission is to actively support research into gene therapies for Rett syndrome. We deeply believe that hope for a cure or effective treatment lies in scientific innovation. However, we also recognize that for many families affected by Rett syndrome, the journey is painfully long, and the uncertainty about the future is overwhelming.

Rett syndrome is a devastating neurological disorder that leads to severe regression of acquired skills, epileptic seizures, loss of speech, motor problems, and other serious medical complications. The quality of life for affected children, as well as their families, is profoundly impacted. Unlike other genetic conditions such as Down syndrome, where some individuals may lead relatively independent lives, the prospects for individuals with Rett syndrome are much more complex.

In this context, the question of prenatal screening for Rett syndrome arises. If this condition could be detected before birth, as is the case with other genetic disorders, we believe it would offer parents important and difficult choices to consider.

To understand the impact of prenatal screening, it is useful to look at statistics related to Down syndrome in countries where such screening is common. For example, in Iceland, nearly 100% of pregnancies diagnosed with Down syndrome are terminated*. In Denmark, approximately 95% of pregnancies with a Down syndrome diagnosis are terminated**. In France, around 80% to 85% of parents choose to terminate a pregnancy after a prenatal diagnosis of Down syndrome.***

These figures show that when prenatal screening is available, many families choose to terminate the pregnancy when a Down syndrome diagnosis is made when this option is legal and available. It is reasonable to think that if prenatal screening for Rett syndrome were available, the prevalence of births with this condition might also decrease significantly, given the severe impact of the disease on quality of life.

We understand that prenatal screening is a delicate subject, raising ethical and personal questions. However, in the absence of a curative treatment, it could provide parents with the opportunity to make informed choices about their family’s future. Cure Rett Canada remains focused on research into therapeutic solutions, but as long as a cure is not available, we believe it is crucial to provide families with access to prenatal screening for Rett syndrome.

This discussion is not easy, but it is necessary. Together, let us continue to advocate for effective treatments and, at the same time, support families in their quest for informed choices.

*Iceland*: According to a CBS News report, nearly 100% of pregnancies diagnosed with Down syndrome in Iceland are terminated, reducing the prevalence to about 1 in 2,000 or less. [CBS News](https://www.cbsnews.com/news/iceland-down-syndrome-100-percent-abortion-rate/)

**Denmark**: Approximately 95% of pregnancies with a Down syndrome diagnosis are terminated. This statistic has been reported by sources such as The Guardian. [The Guardian](https://www.theguardian.com/world/2019/jan/21/denmark-down-syndrome-abortion-rate)

***France***: In France, about 80% to 85% of parents choose to terminate pregnancies following a Down syndrome diagnosis. This information is cited in reports from the French Agency of Biomedicine. [Agence de la biomédecine](https://www.agence-biomedecine.fr/Down-syndrome)