WHO WE ARE

IN BRIEF

MPS Europe gGmbH is established by national MPS societies from 12 European countries: Austria, Denmark, Germany, Ireland, Italy, Hungary, Netherlands, Serbia, Spain, Sweden, Switzerland and UK. Our aim is to gather national MPS societies and advocate for all MPS patients in Europe (including EU member states and other countries – non-EU members) to work together collectively in the interest of the MPS community. The Headquarters of MPS Europe are based in Aschaffenburg, Germany. (Links to download in the text for Statute, Bylaws and registration)
 
In 2016 national MPS Societies expressed the need formalize European MPS network to solve the challenges on a European level avoiding the duplication of working at a national level. Many challenges are similar regarding access to early diagnosis, clinical management, intervention, clinical trials and access to treatment. MPS Europe also addresses the lack of impartial patient
focused relevant information about the MPS diseases and approved treatments. MPS Europe’s priority is to empower communication and advocacy between all stakeholders (patient representatives, patients and their families, physicians, scientists, industry, EMA, EU relevant bodies, governments, insurance funds etc.).
 
Main tasks of MPS Europe are to:
  • Support access to treatment and care for all MPS patients
  • Support national MPS Societies in advocating access to medicines
  • Support establishing MPS Societies in undeveloped countries
  • Represent MPS patients in EMA and other relevant EU institutions and bodies
  • Establish a patient database on a European level
  • Organise European/International conferences
  • Educate and empower patients and patient representatives
  • Improve information flow about diagnostics, treatment, clinical studies, standards of care among MPS Societies
  • Create information materials for early diagnosis, clinical management, interventions and treatment
  • Organise and coordinate MPS Day activities and events for raising awareness

MANAGING DIRECTORS

Marija Joldic, MBA

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.

E-mail: marija.joldic@mps-europe.org; office@mps-europe.org

 

Carmen Kunkel, MBA

  • Support access to treatment and care for all MPS patients
  • Support access to treatment and care for all MPS patients
  • Support access to treatment and care for all MPS patients
  • Support access to treatment and care for all MPS patients
  • Support access to treatment and care for all MPS patients

ADVISORY BOARD

Advisory Board consists of five members who are all parents of MPS children.

Chairman Alfred Wiesbauer, MPS Switzerland

Born in 1962, married to Christine Widmer, father to Valerie and Sophie.

When our younger daughter Sophie got diagnosed with MPS IVa, our life changed and it took a dramatic turn when Sophie became paralyzed after her first operation to stabilize her Neck in 2002. Since then I became involved in MPS and try to improve the lives of the families affected by MPS. MPS Switzerland is closely collaborating with the German and Austrian MPS societies.

Currently I am board member of MPS Switzerland, in the advisory board of MPS Europe, Vice President of ProRaris, the umbrella organization of all rare diseases in Switzerland and therefore engaged in various committees dealing with the National Concept for Rare Diseases. I was founding president of lysosuisse and still work full time in my main profession as dentist.

In the rare moments I have to spare my family is the main concern and we enjoy time together.

E-mail: switzerland@mps-europe.org; board@mps-europe.org

 

Deputy Chairman Michaela Weigl, 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, which she is the president of since 1999. 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 one of the advisory board members of MPS Europe gGmbH.

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.

E-mail: austria@mps-europe.org; board@mps-europe.org

Member Dragana Miletic Lajko, MPS Serbia

Dragana Miletic Lajko is a mother of two, 15 year old girl Kristina and 14 year old Petar, who lives with MPS IVA.

In year 2014 she founded Morquio syndrome association, which later expanded to MPS Serbia, supporting all MPS patients in Serbia and from last year board member of newly established association MPS Europe.

Her basic profession is the Engineer of Organizational Science, but since the founding of the patient association, she has been engaged in full capacity on raising awareness of people with mucopolysaccharidoses, as well as other rare diseases. In the period from 2017 to 2018 she was a president of the National Organization for Rare Diseases of Serbia.

E-mail: serbia@mps-europe.org;  board@mps-europe.org

Member Ana Maria Mendoza Maestre, MPS Spain

I am a mother of two children, the oldest is affected by mps IV A. After his diagnosis in 2007, I began a new stage in my life as a caregiver and as volunteer in MPS Spain Society.

I was vice president of Mps Spain for 6 years. In 2015 I was elected President and I increased my tasks and responsabilities.During all these years, I have trained and gained experience in differents areas related to lysosomal, rare diseases, disability and NGO management.

I have participated in different committees and network patients groups in Spain. I am also a member of the board of directors of the Catalan Federation of Rare Diseases (Fecamm) since June 2018.

E-mail: spain@mps-europe.org;  board@mps-europe.org

Member Georg Shetter, MPS Germany

E-mail: germany@mps-europe.org;  board@mps-europe.org