Thursday, February 26, 2015

I Love Someone Rare and Beautiful

World Rare Disease Day is held annually on the last day of February. The goal is to draw attention to rare diseases as an important public health issue that cannot be ignored. 2015 marks eight consecutive and 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. The campaign targets primarily 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.

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.

Watch the official Rare Disease Day 2015 video, which recognizes these individuals, and brings people living with a rare disease out of the shadows.

Over 7,000 distinct types of rare diseases exist, with more being discovered every day. It is estimated that 350 million people worldwide suffer from a rare disease. About half of all rare diseases affect children, and approximately 30% of children with these debilitating diseases will not live to see their 5th birthday.

While individual rare diseases have small patient populations, collectively the rare disease community is larger than the AIDS and Cancer communities combined. Nicole Boice, founder & CEO of Global Genes says, “This campaign helps unify a fractured community of thousands of small diseases and millions of people who have not had a collective voice. Together we can gain the momentum and exposure needed to influence changes that can lead to lifesaving research and treatments for people with rare diseases.

The lack of scientific knowledge and quality information often results in a delay in diagnosis, and the fact that there are often no existing cures adds to the high level of pain and suffering endured by patients and their families. We know many children and families who are affected by a rare disease, and we realize the importance of creating support and awareness for these rare conditions. You are strong alone, but we are stronger together.

Global Genes and the Gwendolyn Strong Foundation have brought back their popular "I love someone RARE & beautiful" tee in celebration of World Rare Disease Day. Andrew and I are wearing them proudly, to show our support of families and our friends who are impacted by rare diseases and other life-altering conditions.

Rare disease patients and their families face many challenges. The road ahead is long, but enormous progress is being made every day. 
By showing your support for people fighting rare diseases, you can help raise awareness and hope for millions.

 #WearThatYouCare #WRDD2015 #CareAboutRare #RareDiseaseDay #ILOVEsomeoneRAREandBEAUTIFUL

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