On November 10, 2021, RaDiOrg, the Belgian rare disease alliance, honored the work of individuals and organizations active in the field of rare diseases with the Edelweiss Awards. The Edelweiss Award Ceremony is an essential day which highlights the exceptional work that many people carry out behind the scenes, usually on a voluntary basis, in the field of rare diseases. As Vice-President of RaDiOrg, where she represents the Belgian Marfan Syndrome Association, Ludivine was invited to give the closing speech at this wonderful ceremony.. 

RaDiOrg President Stefan Joris welcomed the 200 guests gathered at the Palais de l’Afrique in Tervuren for the Edelweiss Awards 2021. 

Mr Jannie Haeck, CEO of the Loterie Nationale, awarded the Edelweiss for social inclusion to Emino for its project to integrate people with rare diseases into the workplace.

Mrs Julie Gusman, Pharma.be, awarded the Edelweiss for best patient association project to FAPA Belgium‘s AYA project.

Mr. Peter Degadt, new President of the Fund for Rare Diseases and Orphan Drugs, presented the Edelweiss Media Award to Mrs. Lucie Robet for her Podcast‘Je ne suis pas née femme’ (I was not born a woman), in which she talks about 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 and presented an Edelweiss d’honneur to Professor Emerite Jean-Jacques Cassiman for his work in the field of rare diseases and his 20 years as President of the King Baudouin Foundation’s Rare Disease and Orphan Drug Fund.

A representative of Minister Wouter Beke, Flemish Minister for Care and Health, presented theEdelweiss award for a healthcare professional to Professor Marion Delcroix, Respirologist at UZ Leuven.

Following 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 organized 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 for a lengthy exchange of views. In particular, he had the opportunity to chat with the representatives present from 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 particularly wanted to know how it could contribute todrug repurposing in the context of rare diseases. The pleasant exchange with the Minister left us with a very positive impression.  

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

So it’s time to bring this wonderful day to a close, and I’d like to thank Eva for letting me have the last word, thank you Eva.

On behalf of RaDiOrg, I’d 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 Chairman René Westhovens and co-chair Julie Gusman, who devoted their time to the preparations and the call for entries.

Our warmest thanks go to the other members of the jury present today : Stefan Joris and Viviane Tordeurs (from RaDiOrg), Chris Van Haecht (from Christelijke Mutualiteit), Irina Cleemput (from KCE) and Paul de Munck (from Groupement belge des Omnipraticiens).

We would like to thank Ministers Vandenroucke, Beke and Morreale for their attentive presence, which testifies to their interest in rare diseases.

RaDiOrg would like to extend its warmest thanks and congratulations to Professor Jean-Jacques Cassiman for his many years at the helm of the ” Fund for rare diseases and orphan drugs “. RaDiOrg hopes that Peter Degadt, its successor, will stay the course and explore new horizons that will enable the Rare Disease Plan to finally reach its destination.

Once again, I’d like to congratulate all the winners of this year’s Edelweiss Awards, as well as all the nominees. Well done to you all.

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

Humanly speaking, first and foremost, they teach us a great deal 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 encourage the greatest minds in our country and around the world to surpass themselves in order to obtain faster, more accurate diagnoses and discover new treatments. But they also force scientists to question biological mechanisms that concern us more broadly than their individual cases.

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

Some countries, such as the United Kingdom, have understood this, and have launched the ” 100,000 Genomes Project “, which mobilizes state budgets to help numerous rare diseases. For its part, Belgium plays an active role in the European Reference Networks (ERN) and has joined the European 1Million+ Genomes initiative. That’s all well and good, but Belgium can still do more and better when it comes to rare diseases.

People with rare diseases have so much to offer us all as a reward for what we have to do to help them.

So let’s continue to focus our talents, energies and efforts to do better and better, and come out on top.

Thank you very much.