International
ELA raises awareness in favor of newborn screening
On the occasion of International Rare Disease Day on February 28 2026, the 7 ELA European chapters carried out a newborn screening awareness campaign, coordinated by ELA International. Although newborn screening for X-linked adrenoleukodystrophy or metachromatic leukodystrophy is already implemented in some European countries, it is still not practiced in many regions, condemning children affected by these diseases.
Public opinion overwhelmingly supports newborn screening
In March 2025, ELA International commissioned an Ipsos BVA survey on newborn screening for leukodystrophies across all countries where ELA operates (Belgium, France, Germany, Italy, Luxembourg, Spain and Switzerland). The results are clear: the overwhelming majority of respondents are in favour of newborn screening for leukodystrophies, across all countries surveyed.
An awareness campaign
In order to draw the attention of media and general public to the need to implement this screening, every ELA chapter across Europe carried out an awareness campaign targeting national press and social media.
Over nearly two weeks, a series of posts focusing on newborn screening helped to explain the issues at stake, dispel common misconceptions, and address this crucial topic for ELA and families affected by the disease in an engaging and accessible way. These families also spoke out and shared their stories – often painful ones – about the delayed diagnosis of leukodystrophies and their dramatic consequences.
Testimony from Hélène, mother of Mathis who passed away from leukodystrophy (English subtitles available)
Testimony from Céline, mother of Nathanaël and Augustin, both affectd by a leukodystrophy (English subtitles available)
This was complemented by the distribution of a press release to national media, along with an infographic highlighting the main results of the survey. The infographic was also adapted into a carousel of images for use on social media.
At the time of writing, the press release has generated around twenty media placements, including fifteen in France across several national outlets (France Inter, France Info, Radio Classique and Doctissimo) as well as regional press and radio stations (L’Alsace, Dernières Nouvelles d’Alsace). Other European coverage include L’Essentiel in Luxembourg, L’Avenir in Belgium, V-News in Italy and Kreiszeitung in Germany, reaching an estimated total audience of 15.5 million people. Further initiatives are underway to continue raising public awareness of this key issue for ELA families across Europe.
The success of this campaign reminds us of the importance of collective action in going further and win the fight against leukodystrophies!