The first beacon when LAMA2-RD enters your life. How can you deal with and manage the diagnosis? And how can you improve the quality of life? With this brochure we hope to help you overcome the difficult period in the first days after the diagnosis. 

Bram Verbrugge, chairman Voor Sara Foundation: ,,When our daughter Sara was diagnosed with LAMA2-RD, our world collapsed. We had endless questions – about her health, her future, what exactly this muscular dystrophy meant – but found no clear answers anywhere. That uncertainty and the feeling to be left alone were incredibly hard. Later we learned that many other parents had struggled with the same experiences. That’s how the idea for a brochure for the first days after the diagnosis was born. With this brochure we hope to help you overcome this extremely difficult period, give you a helping hand, and help manage the impact of the disease your child has. The brochure was created as a joint initiative of Honours students from Maastricht University, coached by Prof. Bert Smeets, and the foundation Voor Sara chaired by Bram Verbrugge. We hope that this brochure will be more than just a reliable source of information — a true pillar of support during challenging times. Stronger together!”

The Voor Sara foundation offers this brochure free of charge because we believe it’s important that everyone who needs it, has limitless access to the information in it. In addition to a printed version of the brochure, you can also find this information online at voorsara.nl/brochure. The brochure is written in English. When ordering the brochure, you only pay for shipping.