Many #raredisease patients and their families face a multitude of obstacles due to various #healthinequities – from challenges accessing and acquiring necessary social and health services to receiving medicines and treatments.
In honor of #rarediseaseday we are highlighting some of the various health inequities that #MCOPS12 patients and their families have faced.
The Pell Family, who live in Austria with their son Simon, have faced many obstacles. One of the biggest issues has been all of the bureaucracy to obtain various equipment for Simon such as: a wheelchair, a special car seat, and standing aids. After filing numerous documents only a very basic version of these items will be covered by health insurance, requiring the rest to be paid out of pocket. Additionally, in order to make their home accessible for Simon little to no financial support is provided.
The other massive challenge has been the lack of rare disease centers within Austria, especially those focused on ultra-rare diseases. The implications of this are massive and contribute to a lack of research and treatment options for MCOPS12. Which is why the Pell family had to form their own research team – to give their son Simon and all other MCOPS12 patients a chance at a brighter and more independent future.
You can help support us in circumventing the health inequities MCOPS12 patient families are facing by #raisingawareness and #donating .
To donate: https://www.gofundme.com/f/seeking-a-cure-for-simon