Living With A Rare Disease

Over 6000 different rare diseases have been identified to date, directly affecting the daily life of more than 30 million people in Europe and 25 million in the USA alone. The complex nature of rare diseases, coupled with limited access to treatment and services, means that family members are often the primary source of solidarity, support and care for their loved ones. That means for most, parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends are their only Support.  We forget that these support people’s daily lives are impacted and are living day-by-day, hand-in-hand with rare disease patients.

Typically chronic and debilitating, rare diseases have enormous repercussions for the whole family. Living with a rare disease becomes a daily learning experience for patients and families. Though they have different names and different symptoms, rare diseases impact the daily lives of patients and families in similar ways.

  • How to find a diagnosis?
  • How to access treatments?
  • How to find appropriate expertise?
  • How to work with a team of caregivers, such as doctors or physical therapists, and other healthcare professionals and coordinate care between them?
  • How to operate special equipment?
  • How to administer treatments?
  • How to identify and access social services?
  • How to manage the economic burden of living with a rare disease?
  • How to ensure the well-being of the entire family and balance priorities?

Patient organizations such as Ben’s Friends become a crucial source of information, experience and resources. Day-by-day, hand-in-hand, together we present a united voice to advocate for the treatments, care, resources and services we all need. Patients, families and organizations are pivotal to creating solutions for the daily challenges of living with a rare disease in solidarity with all stakeholders – caregivers, healthcare professionals, specialised social services, researchers, pharmaceutical companies, policy makers, and regulatory bodies.

We need to send a strong message of solidarity to the countless rare disease patients and families throughout the entire world. Together, we can transform the individual experience of patients and relatives around the world into collective actions, support, advocacy and community building.

If we don’t have a community for your disease, or there isn’t already one established elsewhere, it is ourgoal at Ben’s Friends to provide one. Please use the community link to at least share with other Rare Disease Suffers about your Daily Challenges YOU ARE NOT ALONE


TJ, Mod Support Ben’s Friends