How can patients and families cope emotionally?

Living with a rare disease is emotionally challenging for the whole family, and you do not need to face this alone. Psychological support, counselling, and peer contact can all help enormously. Over the years, we have built a worldwide community of LAMA2-RD patients and families who truly understand what you are going through and can help. Connecting with others who share your experience can make an enormous difference. If you are not sure where to start, contact us and we will connect you.

Can my child attend a mainstream school? What educational support is available? How can I help my child become more independent? Which sports and physical activities are suitable? Is swimming beneficial? Can people with LAMA2-RD travel safely? What travel preparations are important? How can fatigue be managed? What home adaptations may be helpful? Can someone with LAMA2-RD live independently? Can someone with LAMA2-RD work? What social support services are available? What support is available for siblings?

How can patients and families cope emotionally?

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