A second National Plan for Rare Diseases for the approximately 30,000 people living with a rare disease in Luxembourg.
In September 2023, the association and national alliance representing people affected by a rare disease in Luxembourg ALAN – Maladies Rares Luxembourg, launched a new advocacy campaign with the support of its partner EDS Lëtzebuerg,
The key message of the campaign is that the achievements of the first National Plan for Rare Diseases should be consolidates and a second plan adopted from the beginning of 2024, in order to improve the quality of life of the 30,000 persons affected by a rare disease in Luxembourg.
Through a series of short videos, 11 children and adults living with a rare disease express their hopes for their own future and that of others affected by such a disease.
A huge THANK YOU to our partner EDS Lëtzebuerg, and to our ambassadors Elias, Mara, Jessica, Amy, Laurent, Marielle, Daniel, Hannah, Benny, Noémie and Maria who never miss an opportunity to contribute to raising awareness for rare diseases.
The first National Rare Diseases Plan (Plan National Maladies Rares – PNMR) will come to an end in 2023. Through this plan, a number of important projects were implemented to improve the quality of life of persons affected by a rare disease. It is now essential to not drop the ball, and to continue working together to ensure that the affected children and adults have better access to diagnosis, adequate medical treatments, psychosocial support and socio-economic rights.
Thus, earlier this year ALAN, together with its partners, published a position paper calling for rare diseases to be identified as one of the public health priorities in Luxembourg and for the second National Rare Diseases Plan (Plan National Maladies Rares – PNMR) to be adopted from the beginning of 2024. The position paper is signed by 6 associations working to support people affected by specific rare diseases in Luxembourg. It assesses the situation in Luxembourg with regard to rare diseases and argues why it is important that rare diseases become a political priority for the 2024-2028 legislature.
The position paper presents 7 specific proposals which aim to consolidate the achievements of the first national plan and to continue to improve the daily lives of the people affected by a rare disease:
The complete position paper is available on ALAN’s website : https://alan.lu/wp-content/uploads/2023/02/Position-Paper-2023-final-web.pdf
-click the photo to watch the video - ``My name is Mara and I have an extremely rare genetic disease that affects my muscles and my digestive tract. I live every day with severe pain, fatigue and am underweight.<br /> For 28 years, looking for a diagnosis was like running from room to room in a hotel. As a child, holding my parents’ hands and later alone. Most of the time, I had barely set foot in the room, and I was already labelled as mentally ill. At the doctors' office, the question ``Are you stressed?`` became standard - the easiest method to get rid of me again quickly. But also in other rooms, I suffered because of the judgmental looks and statements, which made me feel even more ill. But not every underweight person is anorexic or bulimic. Not everyone who falls over is drunk, and even if someone looks healthy on the outside, they can be seriously ill. Not everything is as it seems, and I deeply wish that people would judge others less quickly, so that those of us affected by a rare disease do not lose the courage to open a new room door.``
- click the photo to view the video - ``Amy relies on a lot of help in her everyday life, both at home and in school. It is important that Amy gets the support she needs. Her disability, or her impairment in taking part in society, should not be an obstacle. Amy's development can continue in an environment where she is well taken care of and challenged, so that she can reach her full potential.``
-click the photo to view the video - ``I hope for more inclusion of people living with a disability in the planning of public buildings/places.<br /> It’s always good to have well-educated experts on the team, but the successful execution of projects also requires first-hand experience, which you can get from people who are faced with the problems on a daily basis. I can also choose a bed for you, but you would certainly sleep better if you could at least choose the mattress.``
-click the photo to view the video - ``My name is Marielle, I am 33 years old and I live with Charcot-Marie-Tooth. I have been a Luxembourgish teacher for 7 years. My disease affects not only my daily life, but also my work. I can't stand for long periods in front of the whiteboard or in the classroom, and I get tired quickly.<br /> I am lucky to work in a school that supports me a lot. My timetable has been adapted and I participate in working groups for which I can work from home. For two years I have had the “service à temps partiel pour raisons de santé”, but getting there was not easy. I did the regular civil service traineeship (stage fonctionnaire), but the administrative hurdles to get the service were very difficult. I want to work and participate in an active social life, but at my own pace, so that I can lead a dignified life. As should be the case for other people in a similar situation. Work and performance should not be more important than our health.``
-click the photo to view the video- ``As a young chronic pain patient, I hope that in the future I will have the opportunity to receive regular adequate pain therapy in Luxembourg. Pain therapy that can help ease my daily life. Pain therapy that gives me hope for my future. As a chronic pain patient, you need consistent support by a specialized team. Unfortunately, the possibilities for lasting and adequate pain therapy in Luxembourg are still severely limited, even though the demand from pain patients far exceeds the supply. On behalf of many pain patients in Luxembourg, I hope that we can achieve a better future in regards to the treatment of our daily chronic pain.``
-click the photo to view the video- ``ALS (Amyotrophic Lateral Sclerosis) is an incurable neurodegenerative disease in which every muscle in the body is gradually paralyzed. In the end, one is trapped in one's own body, and must be artificially fed and ventilated to continue living. Unfortunately, there is still no effective treatment that can cure or stop this neuromuscular disease. My greatest wish is that research in this area makes massive progress, and that an effective drug against this disease is discovered. That would save many lives.”
-click the photo to view the video- ``I hope that research will progress, and that people can receive their diagnosis faster in Luxembourg. I had to go to the Clinique Génétique Salpêtrière in Paris, because my disease was not well known in Luxembourg. I received the diagnosis too late, so there was a delay in starting the physiotherapy that helps a little with my spasticity.``
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EDS Lëtzebuerg is a non-profit organisation founded in 2021. It’s mission is to inform and enlighten the general public about Ehlers-Danlos syndrome, to contribute to the dissemination of information on screening and treatment methods for Ehlers-Danlos syndrome and to provide information, advice and support for people with Ehlers-Danlos syndrome and help for them and their families.