ALSR (Luxembourg Association for Rett Syndrome) is an organization created in Luxembourg to support people with Rett syndrome and their families.

## ALSR Objectives

The ALSR was founded with several important objectives:

- Raise public awareness about Rett syndrome in Luxembourg

- Break the isolation of families affected by this rare disease

- Promote research on Rett syndrome

- Improve the quality of life for those affected

## Rett Syndrome

Rett syndrome is a rare genetic neurological disorder that primarily affects girls. Its characteristics include:

- Approximately one birth in 10,000

- Normal development until 6-18 months, followed by regression

- Motor and communication disorders

- Autistic-like behaviors and sometimes epileptic seizures

## Situation in Luxembourg

- About ten diagnosed cases in Luxembourg, but likely more people affected

- Few doctors specialized in Rett syndrome

- Lack of a national reference point for this disease

## ALSR Actions

The association works on several fronts:

- Bringing together affected families to share experiences

- Advocating for better medical care and specialized follow-up

- Promoting access to adapted communication tools, such as the Tobii device

- Raising awareness among the public and health professionals about this rare disease

## Hopes for the Future

The ALSR closely follows research advancements, including:

- Ongoing gene therapy trials in Canada

- Development of potential treatments in the United States

The association hopes that these advances will soon benefit Luxembourg patients.

To contact the ALSR, you can reach them by email at info@alsr.lu or by phone at 27 93 87 65 or 691 19 71 00.

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