Apert syndrome and Rare Disease Day 2017

Apert syndrome is a very rare condition and as we do every year, Elijah's Hope is supporting Rare Disease Day.

This year the theme is Research. You can read more about the theme on the official Rare Disease Day website

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives.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.

Eurordis, Europe's Rare Disease Organisation that runds Rare Disease Day has put together this useful information pack to explain all about the day.

You can read more about what it's like living with Apert, by reading our "Living with Apert" series on this website. If you or a family member are affected, who not join in with the discussions on our community forum on RareConnect?

rare disease day 2017

 

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