Books

  • Rare Disease Epidemiology - Book: In mid-2017, John was invited to write a preface for a book called Rare Diseases Epidemiology, which concentrates on the work done for LDNZ and ISMRD and talks about what patient advocates can achieve
  • Transitions: Managing Your own Healthcare: What Every Teen with an LSD needs to know: This is a wonderful book that helps families manage the transition from childhood to adulthood. It helps the young person understand how to take over their own care.
  • Kelley's Journey: Facing A rare Disease with Courage: Denise Crompton is the author of this book. Her daughter Kelley was affected by Mucolipidosis type III. The book is about the family’s journey of living with ML III and how they managed the very complex issues.
  • Diagnosis: Rare Disease: Destined to be a classic ....... The sequel to Kelley's Journey. In Diagnosis: Rare Disease, Denise Crompton offers a compelling look at 13 families who received the diagnosis no parent ever wants to hear. This gripping book provided a heartbreaking expose of what life is like for families that have a member with a rare disease.