ALAN - Rare diseases Luxembourg - Luxembourg
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Alan

News - Annual Report 2019

In 2019, ALAN supported nearly 400 patients and families affected by a rare disease, which represents more than 200 different diseases. The number of psychosocial consultations carried out by the multidisciplinary team in 2019 increased by 40% compared to the previous year.

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Alan

News - Government's response to our open letter

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.
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Alan

News - Presentation video

What is a rare disease?
How many people are affected by a rare disease in Luxembourg?
How does ALAN help and support affected people and families?
 
Watch our new video to get an overview of the association's activities.
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Alan

News - Open letter to the government regarding the health crisis

For families with children and people with a serious and/or rare disease, which we represent, the current health crisis represents an additional burden in their already difficult journey. To respond to their questions, concerns and needs, we have partnered with several organizations to send the following open letter to the Luxembourg government.

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Alan

News - COVID-19 and rare diseases – Message from Dr Michel Hoffmann

Because of the uncertainty and misinformation regarding COVID-19, we asked Dr Michel Hoffmann, if there are any particular precautions that people living with a rare disease should be taking during the current pandemic.

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Alan

News - Changes due to COVID-19 pandemic

Following the newest government guidelines regarding the COVID-19 pandemic, all our psychological and social consultations will be carried out exclusively via telephone or secure video conference until further notice. All of ALAN’s recreational activities (yoga, swimming, horse therapy) have also been cancelled until further notice.

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Alan

News - ALAN receives European award for its commitment

On the 18th of February 2020, ALAN – Maladies Rares Luxembourg received a Black Pearl Award from EURORDIS, the European alliance of organisation for patients with rare diseases. 

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Alan

News - Rare Disease Day 2020

For the international Rare Disease Day 2020, ALAN is organising the fifth edition of its big Quiz Night, on 29 February 2020 at the event hall in Holzem. 

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Alan

News - Launch of the " Infoline Maladies Rares Luxembourg"

As part of the first National Plan for Rare Diseases 2018-2022, the Ministry of Health launched the "Infoline Maladies Rares Luxembourg", a first line of support, information and consultation for people affected by a rare disease, their loved ones and healthcare professionals.

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