navigating through the complexities of rare disease together 

It all started when…

our daughter Amalia was diagnosed with a rare terminal disease called Juvenile Tay Sachs, or Gangliosidoses GM2. At three years old and still figuring out the ‘parenting thing', we were not prepared for the overwhelming complexities that come with such a diagnosis.  Which doctors would she need?  What types of therapies?  How could we integrate her with other children — even as the disease progressed?  What about her diet and feeding alternatives?  The questions were endless, and mind numbing and often left us feeling alone and isolated. 

In 2017 we started the Sticky Fingers Familien Verein e.V. and are dedicated to improving the quality of life for families who have a child with a rare, life-limiting disease.  Our sole purpose is to provide families access to resources, tools and community through workshops, personal networks and special events to help alleviate isolation and encourage well-being.

Outreach

• Family networking

• Specialist consultations

• Health & wellness coaching

• Parent workshops and events