Visit with Dutch Neuromuscular Patient Group Spierziekten Nederland
admedicum was very pleased to have the chance to visit the Dutch muscle organization Spierziekten Nederland in Baarn, Netherlands!
We were honored to meet Ria Broekgaarden who took the time to show us around and share insights into this great patient organization of 17 full-time people and 300(!) patient and caregiver volunteers. The organization is covering more than 200 neuromuscular diseases in the Netherlands. Ria is amongst others, project leader for SMA and Pompe Disease and is also deeply involved in Facioscapulohumeral muscular dystrophy.
The organization works independently from industry grants and provides meaningful services and information on a professional level to patients. Besides providing information for patients and relatives on all aspects of the disease for all kind of neuromuscular diseases, from organizing themselves after receiving the diagnosis to treatment facilities to everyday issues such as the organization of kindergarten and school or legal questions, they also support physicians and other HCP´s involved with offering a holistic service of information. They host a patient conference in neuromuscular diseases in the Netherlands twice a year, with 2000 people each conference and around 20 different diseases covered at a time.
Spierziekten Nederland broadcasts videos and webcasts on currents themes and hot topics that they receive from the patient community. Assisted by their scientific and patient boards they are able to offer a very professional service and are therefore highly appreciated and accepted by patients and members.
We even had the chance to record a session at their fully equipped studio where they regularly record interactive web sessions to answer requests from patients and inform them about all relevant aspects of their diseases such as legal regulations. They work closely with the people they work for and also exchange often to national and international organizations. Many umbrella organizations were founded here like SMA Europe and the European Polio Union.
It was also a great and unexpected surprise to meet Ingrid de Groot and the Myositis Nederland Group after we just released the Inspiration 2020 Patient Story together!
Spierziekten Nederlands is not only a highly professional organization but also has highly skilled and valuable people behind it! Thank you so much for their time and inspiration, we'll continue to ride the wave of patient power!