FOR IMMEDIATE RELEASE
17.02.2025
There are over 1.2 million people in the Netherlands living with a rare disease and at least 75% of those cases are diagnosed in pregnancy or childhood.[1] Therefore, we know that the journey from diagnosis to care in navigating a rare disease predominately impacts young families. With this journey often comes a tremendous additional burden for parents, both emotionally and practically, as they try and not only cope with the diagnosis and their new reality but navigate adequate long-term care and education for their children.
A Different Story, a community-based foundation in Amsterdam, working with these families, sees this gap and has made it its mission to address it. New funding has enabled this foundation to broaden its services and offer additional and tailored support to families caring for a child with a rare disease and/or intensive care needs. For example, they can assist parents in applying for financial support, such via the WLZ or PGB budgets or make decisions regarding suitable special education options. They also hold a support group meeting, which helps parents to build their community and learn from shared experiences.
Sarah LaPham, the Founder and Director of A Different Story emphasizes the importance of supporting these families:
I know first-hand the added and seemingly unnecessary struggles in navigating basic and essential services and care for my child with a rare disease in the Netherlands. As if having a baby isn’t hard enough, the system is hard to navigate with conflicting advice and a lack of holistic support. We can do better and with this funding we will, because in comparison to other countries the Netherlands offers a lot, but the bureaucracy in accessing it is very real for families.
A Different Story supports families caring for a child with a rare disease and/or has intensive care needs. They strive to improve the experience and ‘patient pathway’ of these families in this often difficult and isolating journey in making decisions regarding the health, education and long-term care of their child in the Netherlands. They offer practical advice and information alongside mental health support for parents.