Aside the formal diagnosis given by the treating physician, input from other patients who "have already been on this road" and "who get it" is essential for better understanding the diagnosis and its future outlook.
Information on health related issues is indeed a significant part of online searches and a growing patient need. Patient stories provide real life disease-related information in simple language and from the patients' perspective, helping to reduce feelings of fear and isolation that usually accompany diagnosis.
For a rare disease patient, hearing other patients' life stories is a source of support, information and inspiration for coping with a disease that affects only a small number of people in the world.
In the rare disease field, where knowledge is largely to be discovered, patient stories, combined with other data, can help yield important information to promote change and improvement in existing services.
Leveraging the #powerofstorytelling to support patient living and promote social awareness.
Your patient perspective can reveal important tendencies in rare diseases and help promote change. #patientstories #rarediseasestories