February 28, 2020
Rare Disease Day 2020: We Are the 300 Million!
February 29th, 2020 is Rare Disease Day! Show your support by learning about actions you can take in order to raise awareness.
Rare Disease Day is the official international awareness-raising campaign for rare diseases. Rare Disease Day takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
Rare Disease Day was launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008."
There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6000+ rare diseases we work towards more equitable access to diagnosis, treatment, care and social opportunity.
Rare Disease Day is the official international awareness-raising campaign for rare diseases. Rare Disease Day takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
Rare Disease Day was launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008."
There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6000+ rare diseases we work towards more equitable access to diagnosis, treatment, care and social opportunity.
OUR KEY MESSAGE FOR RARE DISEASE DAY 2020 IS THAT:
Rare is many worldwide.
Rare is strong every day.
Rare is proud everywhere.
To learn more about Rare Disease Day, visit their website here.
TAKE PART IN RARE DISEASE DAY!
To learn more about Rare Disease Day, visit their website here.
TAKE PART IN RARE DISEASE DAY!
- Join us on social media (Facebook, Twitter and Instagram) and make posts using these hashtags #RareDiseaseDay #ARPKD #endPKD
- Organize an event
- Sign up to receive our updates
- Share your story
- Take action locally
RARE DISEASE STATISTICS:
- 1 in 20,000 people worldwide are affected by autosomal recessive polycystic kidney disease (ARPKD)
- 300 million people are living with a rare disease worldwide
- There are over 6000 different rare diseases
- 72% of rare diseases are genetic
- 70% of those genetic rare diseases start in childhood
MEET ARPKD WARRIOR, HURRICANE HARRISON
Harrison was diagnosed with autosomal recessive polycystic kidney disease (ARPKD) before he was born. His dad, a teacher and illustrator, has found artistic inspiration in his tough little boy, who the family calls Hurricane Harrison. Today, he has defied the odds stacked against him, but there is still a long road ahead. More treatment options will be needed for Harrison as his ARPKD progresses. Revisit his story to find out how you can help children like Harrison.
Harrison was diagnosed with autosomal recessive polycystic kidney disease (ARPKD) before he was born. His dad, a teacher and illustrator, has found artistic inspiration in his tough little boy, who the family calls Hurricane Harrison. Today, he has defied the odds stacked against him, but there is still a long road ahead. More treatment options will be needed for Harrison as his ARPKD progresses. Revisit his story to find out how you can help children like Harrison.
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