Personal Message from Tanja Raab-Rhein
As the patron of the “Förderverein für unerkannte und seltene Erkrankungen Hessen” (FUSE), the Support Association for Unrecognized and Rare Diseases, I would like to extend a warm welcome to you. I look forward to welcoming many of you soon at the 17th World Congress of the International Cleft Lip and Palate Foundation here in Frankfurt am Main, my hometown in Hesse.
Approximately one in twenty people is affected by a rare disease. To raise awareness of these diseases and to contribute to the further development of teaching, research and care, representatives of the two university hospitals in Frankfurt and Giessen-Marburg have joined forces in our association. After all, a strong network is indispensable, especially in the case of rare and undiagnosed diseases.
As you know from your experience, various other types of congenital facial clefts occur very rarely, unlike the common cleft lip and palate. However, the children affected by these also need help. They, too, deserve our full attention.
I am very grateful that you, oral and maxillofacial surgeons from all over the world, will come together to share your knowledge about these rare cases and to exchange ideas with each other. In the fight against rare diseases, networking among experts plays a crucial role in improving the quality of life for those affected.
I am also particularly pleased that the focus of your conference and your work is on the patients’ wishes and holistic treatment approaches. After all, people with rare diseases often have to endure a long ordeal before receiving help. This is especially stressful for families when young children are affected. Therefore, I can only endorse an approach that treats patients holistically and places their wishes at the center of treatment.
I would like to thank you sincerely for your commitment to our common goal of opening up a new perspective on help and healing for many sick people and of sustainably improving their quality of life.
Tanja Raab-Rhein
Patron of the Support Association for Unrecognized and Rare Diseases Hesse
Schirmherrin des Fördervereins für unerkannte und seltene Erkrankungen Hessen (FUSE) e.V.