At the end of March, ALAN and a number of other association sent a joint open letter to the government to draw their attention to specific issues caused by the COVID-19 pandemic for families, where one person lives with a rare or severe chronic disease.
Below you can find the Ministers’ response as well as our position statement to their response.
We were glad to see the government’s positive response and the concrete actions it has initiated to respond to most of our points. Thus, we were for example able to
- distribute face masks to the other signatory associations and the particularly vulnerable patients that are currently seen by our consultation team,
- send a list of vital drugs to the Ministry of Health so that they can ensure continuing access to these medications,
- nominate a patient representative who can consult with the Ministry of Health on the information they publish regarding medication.
However, the response to the point regarding the leave for family reasons for both parents was not satisfactory in our opinion, which is why we laid out our arguments in a second letter (position statement).
We would like to thank our partners in this initiative:
- Fondatioun Kriibskrank Kanner (aide aux enfants atteints d’un cancer)
- Häerzkrank Kanner Lëtzebuerg ALAEC
- Info-Handicap Asbl
- Wäertvollt-Liewen asbl
- Een Häerz fir kriibskrank Kanner asbl
- Association Européenne contre les Leucodystrophies
- Syndrome de Marfan den-i asbl