of Eva Luise Köhler on the occasion of the 17th International Symposium on MPS and related diseases - Conference on MPS and related diseases  (She is the wife of past president of the federal republic of Germany, Horst Köhler)

Dear Ladies and Gentlemen, Dear members of the MPS networks from Germany, Austria and Switzerland,

"Mucopolysaccharidoses, mannosidoses, mucolipidoses" - are terms that probably caused big question marks among parents, fellow members and especially physicians not only in the early years of the MPS networks. Thanks to the initiative of the MPS network, parents can now read about lysosomal storage disorders and what this means for their child and family, and where they can find help and support. Affected parents in Germany joined together to form this network almost 40 years ago. They set out to fill gaps in knowledge, to close gaps in the care system of our health care system, to strengthen each other and to stand by other affected parents, not only with legal advice and grief work.

They set out to gain insights, pool knowledge, provide information for those affected as well as medical and research professionals, and decided early on to network worldwide - both among themselves and with experts from medicine, research and science. They have always worked closely with their German-speaking partners in Switzerland and Austria.The MPS network and its partners plan biannual international conferences at which more than 1000 participants from all over the world are now expected, including affected families, doctors, researchers and therapists.When Carmen Kunkel asked me to be the patron of the upcoming conference, which is now in its 17th round, one of the things she wrote was that it was an event that was not just about providing information, but about an encounter at eye level. As patron of ACHSE and from my many years of foundation work with the Eva Luise and Horst Köhler Foundation, I know the significance of this statement.

Where knowledge and expertise on individual diseases is scarce, therapies hardly available and the paths to diagnosis and treatment are also convoluted and long, those affected have joined forces: The self-help organizations in the ACHSE network do irreplaceable work in the field of rare diseases - largely on a voluntary basis. The need has made them experts in their diseases. Recognizing this knowledge as a treasure, listening to patient organizations and integrating their expertise is essential if we want to make a difference in the field of rare diseases. This exchange on eye level provides change.

Surely you too have had a rocky road in your self-help work, have had to overcome many hurdles in order to be able to look back now on what you have achieved in all these years. For this you deserve recognition, respect and more than applause. I am very pleased to have taken on the patronage of the MPS conference and am already looking forward to a fruitful exchange and lively cooperation in April 2024 in Würzburg.

Until then, I wish you all all the best and much strength for the coming time.

With warm regards
Eva Luise Köhler