Ludivine closes the Edelweiss Awards 2021 ceremony organised by RaDiOrg


2021 / Saturday, November 13th, 2021

On 10 November 2021, RaDiOrg, the Belgian rare disease alliance, honoured individuals and organisations active in the field of rare diseases with the Edelweiss Awards. The Edelweiss Award ceremony is an important day that highlights the exceptional work that many people do in the field of rare diseases, usually on a voluntary basis. As Vice-President of RaDiOrg, where she represents the Belgian Marfan Syndrome Association, Ludivine was invited to give the closing speech at this very beautiful ceremony

The welcome speech to the 200 guests gathered at the Palais de l'Afrique in Tervuren for the presentation of the Edelweiss Awards 2021, was delivered by the President of RaDiOrg, Mr Stefan Joris. 

Mr. Jannie Haeck, CEO of the National Lottery, presented the Edelweiss for Social Inclusion to Emino for its project to integrate people with rare diseases into the workplace.

Ms Julie Gusman, Pharma.be, awarded the Edelweiss for the best patient organisation project to the AYA project of FAPA Belgium.

Mr. Peter Degadt, the new President of the Fund for Rare Diseases and Orphan Drugs, presented the Edelweiss Media Award to Ms. Lucie Robet for her Podcast 'I was not born a womanin which she discusses her life with MRKH syndrome.

Mrs. Yolande Avontroodt, RIZIV-INAMI, Mrs. Lut De Baere, Honorary President of RaDiOrg, and Mr. Gerrit Rauws, King Baudouin Foundation, paid tribute to Professor Emeritus Jean-Jacques Cassiman and presented him with an honorary Edelweiss for his work in the field of rare diseases and for his 20 years of presidency of the King Baudouin Foundation's Rare Disease and Orphan Drug Fund.

A representative of the Flemish Minister for Care and Health, Wouter Beke, handed over theEdelweiss for a health professional to Professor Marion Delcroix, Pulmonologist at the UZ Leuven.

After the broadcast of a congratulatory video recorded by Minister Frank Vandenbroucke, Federal Minister of Health, one of his representatives presented the Edelweiss for an outstanding patient to young Louise Daneau, ABEFAOwho was one of the main faces of the campaign #notaunicorn organised by RaDiOrg in 2021.

As Vice-President of RaDiOrg, where she represents the Belgian Marfan Syndrome Association, Ludivine gave the closing speech at this magnificent ceremony.

During the reception that followed the ceremony, Minister Frank Vandenbroucke joined the guests and had a long discussion with them. He had the opportunity to discuss with the representatives of the Belgian College of Human Genetics and Rare Diseases (namely Prof. dr. Elfride De Baere, UZ Gent, Prof. dr. Karin Dahan, IPG Loverval and Prof. dr. Gert Matthijs, UZ Leuven). He was very interested in the genomic approach and wanted to know how it could contribute to the reuse of medicines (drug repurposing) in the context of rare diseases. The pleasant exchange with the Minister left a very positive impression.  

 

Text of the closing speech of the Edelweiss Awards 2021 ceremony by Ludivine Verboogen (10/11/2021)

So it's time to close this beautiful day and I thank Eva for letting me have the last word, thank you Eva.

On behalf of RaDiOrg, I would first like to thank you all for coming in such large numbers.

RaDiOrg would like to thank the members of the Edelweiss Awards Jury, and in particular President René Westhovens and Co-President Julie Gusman, who spent a lot of time preparing and calling for nominations.

We would like to thank the other members of the jury present today: Stefan Joris and Viviane Tordeurs (from RaDiOrg), Chris Van Haecht (from Christelijke Mutualiteit), Irina Cleemput (from the KCE) and Paul de Munck (from the Belgian General Practitioners' Group).

We thank Ministers Vandenroucke, Beke and Morreale for their attentive presence, which shows their interest in rare diseases.

RaDiOrg would like to thank and congratulate Professor Jean-Jacques Cassiman wholeheartedly for having been at the helm of the "Fund for Rare Diseases and Orphan Drugs" for many years. RaDiOrg hopes that Peter Degadt, his successor, will stay the course and explore new horizons that will allow the Rare Disease Plan to finally reach its destination.

I would like to congratulate all the winners of this year's Edelweiss Awards and all the nominees. Congratulations to all of you.

Your initiatives and determination are an inspiration to us all.

You are the winners but today we are all winners.

Patients, patient representatives, caregivers, researchers, policy makers - we all win when we fight for rare disease patients because they push us to be better and to go further.

I strongly believe that people living with rare diseases have an essential role to play in our societies.

Humanly speaking, first and foremost, they teach us a lot about who we are and what we are capable of giving. They question our humanity. The love we show them gives us the strength to move mountains for and with them.

Secondly, from a scientific and medical point of view, they lead the greatest minds in our country and throughout the world to surpass themselves in order to obtain faster and more precise diagnoses and discover new treatments. But also, they force scientists to question biological mechanisms that concern us more widely than their particular cases.

Research into rare diseases is advancing the understanding of the human genome and this knowledge is paving the way for the treatment of rare and much less rare diseases.

Some states, such as the United Kingdom, have understood this well and have launched the 100,000 Genomes project "Belgium is an active participant in the European Reference Networks (ERN) and has joined the European 1Million+ Genomes initiative. Belgium is also an active participant in the European Reference Networks (ERN) and has joined the European 1Million+ Genomes initiative. This is good, but Belgium can still do more and better in the field of rare diseases.

People with rare diseases have a lot to offer to all of us as a reward for what we need to do to help them.

So let's continue to focus our talents, energies and efforts to do better and better and come out all winners.

Thank you.

 

 

 

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