BDFA are supporting this years Rare Disease Day on February 28th. www.rarediseaseday.org
2015 marks eight consecutive, successful years of Rare Disease Day. Continuing the momentum, Rare Disease Day 2015 puts the focus on the daily lives of patients, families and caregivers who are 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 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. The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who 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?