Dr. Alfred Wiesbauer
Chairman – MPS Switzerland
Born in 1962, married to Christine Widmer, father of two daughters Valerie and Sophie. Fredi got involved in the field of lysosomal storage diseases after Sophie, the younger daughter, was diagnosed with MPS IVa in 2002. The life of the family changed and it took a dramatic turn after Sophie became paralyzed after her first operation to stabilize her neck. Being a caregiver for Sophie is one of the constants in his life. But despite her multiple handicaps she is now a happy young lady making an apprenticeship in commercial building design. This in turn is a major reward for all the efforts of the entire family. Besides working as a dentist full time he is engaged in MPS Switzerland as vice president, as Chairman of the Advisory Board of MPS Europe and as vice president in ProRaris, the umbrella organization for all rare Diseases In Switzerland. He was founding president of Lysosuisse and is still engaged in governmental groups concerning the Swiss national concept for rare diseases. In his spare time he enjoys the relaxing atmosphere in the Black Forest where there seems to be no stress.
Deputy Chairman – MPS Austria
Born in 1962, married to Martin, mother of five wonderful children. Michaela started getting involved in the Austrian MPS Society right after her daughter Maria has been diagnosed in 1996 at the age of 3 ½ years with MPS IV A. Due to this, her life changed dramatically. She left her job as a teacher for Mathematics, Physics and Chemistry and started to volunteer for the Austrian MPS Society, where she is serving as President since 1999. Now, after more than 20 years in the field of rare diseases in general and of mucopolysaccharidoses in particular, filled with hard and engaged work, she believes that her current profession is rather a vocation. She loves to Make Patients Smile and is quite happy about what she was able to achieve so far. The Austrian MPS Society is a competent and well-recognized contact point, not only for patients suffering from MPS and related diseases and their families, but also for all concerned. Michaela organizes national conferences for both families and professionals, therapy weeks for MPS patients, educations for therapists, mums´ time outs, dads’ activity weekends, sibling weeks and meetings for adult patients annually. Raising money to run all these events, to support patients as well as research projects is one of her most intensive tasks apart from giving emotional support to affected families. Together with a half time staff member it is mainly Michaela´s family who volunteers to complete the daily responsibilities. In 2012 Michaela received the Life for MPS Award. She is also involved in Pro Rare Austria, where she is one of the founding members and board member, member of the international MPS Network and a Deputy chair of the Advisory board of MPS Europe.
Dragana Miletic Lajko
Member – MPS Serbia
Dragana is a mother of 15 year old girl Kristina and 14 year old Petar, who lives with MPS IVa. Her basic profession is the Engineer of Organizational Sciences and she holds Master degree in Security Management. In 2014 she founded Association for help and support to persons affected by Morquio syndrome, which later expanded into the Association for help and support to persons affected by mucopolysaccharidoses and related lysosomal diseases - MPS Serbia where she serves as a President since foundation. Since she has been fully engaged on raising awareness of people with mucopolysaccharidoses, as well as other rare diseases.then From 2015 to 2018 she was a Board member of the National Organization for Rare Diseases of Serbia (NORBS). She is a member of IMPSN and an Advisory Board member at MPS Europe.
Ana Maria Mendoza Maestre
Member – MPS Spain
Ana is a mother of two children, the oldest is affected by MPS IVa. After his diagnosis in 2007, she began a new stage in her life as a caregiver and a volunteer in MPS Spain Society. She was a vice president of MPS Spain for 6 years and since 2015 she serves as a President and she increased her tasks and responsibilities. During all these years, she has trained and gained experience in different areas related to lysosomal and rare diseases, disability and NGO management. She has participated in different committees and network patient groups in Spain. She is also a member of the Board of directors of the Catalan Federation of Rare Diseases (Fecamm) since June 2018 and a Advisory Board member in MPS Europe.
Managing Director – MPS Europe
Marija Joldic has worked as a patient advocate since 2013, when she left her job in the food industry to campaign for access to enzyme replacement therapy for her son and other patients with MPS II (Hunter syndrome) in Serbia. Campaign efforts succeeded in 2014, allowing reimbursement for all children with treatable lysosomal storage disorders. Her son Filip unfortunately passed away in 2016. Ms Joldic co-founded the Hunter Syndrome Association in 2011 and served as president of National organization for rare diseases Serbia from 2013 until 2017. She has contributed to consultations for the Serbian Ministry of Health by serving as Supervisory Board Member for a budget fund for rare and incurable diseases and as a Member of the Working Group for the development of a national strategy for rare diseases. In 2017, Ms Joldic received her master’s degree in healthcare management from the Faculty of Medicine at the University of Belgrade, Serbia with a focus on the needs and demands of rare disease patients. She is currently a Managing director of MPS Europe and a Board Member for the International MPS Network.
Andrea works with vulnerable groups since 2012. She started with women who were victims of violence, and for 5 years she was a counselor on SOS phone for victims and held peer-to-peer workshops. From 2015, Ms. Nenadic is employed at the National organization for rare diseases of Serbia, where she gives direct support to patients in the field of social security. She holds diploma of Gestalt psychotherapist a four years education program. Psychotherapy is her passion, exploring the essential human topics make her open, vulnerable and joyful. Her main interest are people with disabilities, victims of violence and people in developmental or/and life crisis. She enjoys reading, yoga, nature and connecting with others. Currently she provides psychological support for adult MPS patients in MPS Europe.