MPS-C2M2: A Personal Perspective - Understanding the MPS Patient's Needs

ORGANISED AND VIDEO IS AVAILABLE

➡️ Recorded: Wednesday 27 May 2020  
➡️ Language: English  
➡️ Duration: 40 min  
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Presenter: MICHAELA WEIGL, Austrian MPS Society, Austria  
▷  Presenter: OSKAR AHLBERG, Swedish MPS Association, Sweden  

Learning Objectives: (1) Understanding a child’s MPS diagnose journey from the family's perspective (2) Gaining an insight into everyday life, family, siblings, daycare, kindergarten and school (3) What all paediatricians need to pay attention to - useful tips and advice from parents to HCPs (4) What parents want paediatricians to ask them but they never have

 

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  • Michaela Weigl is a parent, President of the Austrian MPS Society and Deputy Chair of the Advisory Board of MPS Europe, 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. 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 Co-chair of the Advisory board of MPS Europe.

  • Oskar Ahlberg is a parent, President of the Swedish MPS Association, Member of the Board of Directors for Rare Diseases, Sweden. Oskar was born in Stockholm, Sweden, in 1971. He studied at the Royal Institute of Technology and got a Masters of Science in Computers and Marketing in 1996. After working for IT companies in Germany and the UK for a few years, he returned to Sweden and started a career as a serial entrepreneur. He has founded or co-founded several companies in the IT, green energy and real estate sectors. He has mainly held managerial positions in the fields of sales, marketing and communication. He lives in Stockholm and has three children: Olivia born in 2012, Kasper born in 2014 and Molly born in 2019. In 2017, Kasper was diagnosed with MPS IIIa (Sanfilippo a), and Oskar gradually left the business world and focused more and more on volunteer work as a patient advocate for MPS patients in particular but also engaging with other rare disease issues. Today he is the president of the Swedish MPS Association, a member of the Board of Directors for Rare Diseases Sweden and is a member of the Swedish government Patient’s Council (representing the Rare Diseases patients group).

Important Note: The information provided on this session is intended and designed for use by healthcare professionals with an interest in metabolic diseases and MPS. All session viewers are required to register for the selected webinar before accessing the content. Content and views shared are solely those of the speaker.

The course is an MPS Europe project in partnership with MetabERN and the Excellence in Pediatrics with the support of Abeona, Biomarin, Orchard Therapeutics, Regenxbio, Sanofi Genzyme, Takeda, and Ultragenyx. All modules of the course are independently organised by EIP in terms of content, topics and speakers appointed. 

 

 

 

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