Testimonies
Here is what some of our friends, supporters, rare disease patients and Gala Committee members have to say about EURORDIS and/or the EURORDIS Gala Dinner:
‘I believe that goodness and love both received and given add meaning to life. We shall not forget about the European citizens living with rare diseases. This Gala dinner is an opportunity to show solidarity and to give hope to rare disease patients.’ Herman van Rompuy, President of the European Council (Honorary Chairman of the EURORDIS Gala Dinner)
‘Thank you for the opportunity to be involved, create, make friends, be treated like normal and especially for the fact that you guys, at EURORDIS, help us go beyond the pain of our conditions and bring out the best in us, transforming a tragedy into a cause… I am not sure how much you are aware of the things you started and the emotional implications behind the scenes… but thank you anyway for everything.’ Camelia Lazar (Williams Association, Romania)
‘NORD salutes our European Partner, EURORDIS, on the occasion of this Gala Dinner, and we look forward to many more years of working together on behalf of all patients and families affected by rare diseases.‘ Peter L. Saltonstall (NORD USA)
‘Because no disease is too rare to deserve treatment, we must improve the development process for rare diseases therapies and do more with the science we already have.’ Emil Kakkis (KAKKIS EVERYLIFE FOUNDATION)
‘I am sure the EURORDIS Gala Dinner will go a long way towards raising awareness of the issues affecting the millions of European citizens affected by rare diseases while securing much needed funds to support the continuation of the vital work undertaken by EURORDIS.’ Avril Daly (Fighting Blindness, Ireland)
‘With a rich pipeline of innovative products and increased interest from the biopharmaceutical industry in rare disorders, it is a wonderful time to come together as we continue to partake of the leadership EURORDIS has provided over the past 14 years. The EURORDIS Gala Dinner will present an opportunity to celebrate solidarity, share hope for individuals with rare disorders throughout Europe and be inspired by all that can be accomplished when we work together.’ Claudia Hirawat (PTC Therapeutics Inc. USA)
‘Getting together with other patient representatives … made a great difference in my life. Learning to live with many restrictions and knowing that one is not alone in this effort is one lesson. … It is important to continue with life, to set goals and achieve them, to have fun and dream, even if one has only one minute of life to live. This is a lesson of life.’ Stamatina Manolias (TO MELLON – Association of people with genetic disorders, Greece)
‘Coming together in Europe under the umbrella of EURORDIS achieves strength – in numbers, in spirit and in the ability to advocate on behalf of all with rare disorders.‘ Frank Sasoowski (NORD, USA)
‘EURORDIS is an outstanding and excellent example of a dynamic, collaborative organisation that helps people in all the European Union States to work together for the Rare Disease community.’ Richard West (Behcets Syndrome, United Kingdom)
‘At Helsinn we have always been dedicated and focused on the development of innovative therapies in order to improve patients’ quality of life. The treatment of rare diseases is very important for us and to this purpose we have been supporting the European Organization for Rare Diseases for some years. We believe that finding a proper treatment for rare diseases will match our focus on patients’ quality of life.’ Riccardo Bragli, CEO Helsinn Group
‘From the start of our patient organisation, EURORDIS has provided us with a very professional structure of support. Eurordis colleagues were of invaluable help in our advocacy battle for new medicines for the MM patients.’ Greetje Goossens (EMP: European Myeloma Platform)
‘Lorsque j’étais enfant, mon père me répétait souvent: “tu t’ enrichis de ce que tu donnes. Offre ton soutien et ton aide avec coeur et sincérité. Et n’oublie pas que tout ce qui n’est pas donné est perdu.” Aujourd’ hui, je suis fière et émue de participer, avec vous tous, à cette belle aventure et d’apporter ma petite contribution à EURORDIS. Grâce à notre engagement et à notre générosité, faisons gagner la Vie.‘ Reem Boustany (Gala Committee Vice-Chair)
‘The EURORDIS Gala Dinner makes me believe that Empowerment is a reality for patients with rare diseases at all levels, from research to regulatory aspects of the orphan-drug decision, including production of awareness through initiatives like the EURORDIS Gala Dinner. Thus society in general will contribute to better healthcare, treatment and outcomes for our patients.’ Vanessa Ferreira (Portuguese and Spanish Association for Congenital Defects of Glycosylation)
‘Working in the field of rare diseases is not an ordinary job; it impacts your whole life. You feel personally touched and involved in the battle of these many families affected by a rare disorder. It is a moving and precious experience!’ Stéphanie Hoffmann, Senior VP Corporate Development, Enobia Belgium (Gala Committee Member)