Rare Disease Day 2015: Day-by-day, Hand-in-hand

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Today is the eight annual Rare Disease Day, an international advocacy day held on the last day of February — a rare day for rare people. Rare Disease Day 2015 puts the focus on the daily lives of patients, families and caregivers who are living with a rare disease. This year’s slogan is “Day-by-day, hand-in-hand”, which emphasizes the need for international cooperation.

The main objective of Rare Disease Day is to raise awareness about rare diseases and their impact on patients’ lives. The annual campaign targets the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Rare Disease Day was first launched by the European Organization for Rare Diseases (EURORDIS) in 2008. The following year, the National Organization for Rare Disorders (NORD) partnered with EURORDIS and became the sponsor of Rare Disease Day in the United States. Partnership has expanded beyond the U.S. and Europe, and in 2014 more than 84 countries around the world participated in the event.

Living with a Rare Disease

In the United States, a rare disease is any disease that affects less that 200,000 people. There are nearly 7,000 rare diseases, also called orphan diseases [1]. Most of these diseases are genetic, serious, chronic and debilitating.

Following the Rare Disease Day theme Living with a Rare Disease, the 2015 video poignantly recognizes the millions of families, friends and carers whose daily lives are impacted by rare diseases. Check it out below.

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. Worldwide, rare disease patients face many of the same medical, social and economic challenges. Indeed, 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 and coordinate care?
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 are a crucial source of information, experience and resources. At the National Organization for Rare Disorders (NORD) website, a patient organizations database can help those with a rare disease find a patient organization or other sources of help. Another resource called RareConnect, EURORDIS’ moderated multi-language online social forum, allows people with rare diseases to break their isolation and connect and share experiences.