The Beech Australian Community
We are a charity that has been established to provide an Australian Community that will support and assist people with Bladder Exstrophy, Epispadias, Cloacal Exstrophy, Hypospadias and related conditions, and to provide support and advice for their family members and friends.
Rare Disease Day takes place on the last day of February each year.
The main objective of Rare Disease Day is to raise awareness amongst 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.
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life.
Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision-makers to address the needs of those living with rare diseases.
Rare Disease Day events are down to hundreds of patient organisations all over the world
who work on a local and national level to raise awareness for the rare disease community in their countries.
Since Rare Disease Day was first launched by EURORDIS and itsCouncil of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. We especially thank our official Rare Disease Day partners, the National Alliances. These are umbrella organisations who group together several rare disease organisations in a given country or region.
The campaign started as a European event and has progressively become a world phenomenon,
with the USA joining in 2009 and participation in 94 countries all over the world in 2017. Hundreds of cities continue to take part in Rare Disease Day and we hope even more will join in 2018.
The first Rare Disease Day was celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a ‘rare’ number of days.
BEECH: Beginner Core Routine Today we are back with Ellie who is an Exercise Physiologist and Pilates Instructor.
BEECH: Happy Hips Today at the Beeach Community, we will talk with Ellie, an Exercise Physiologist and Pilates Instructor. She will be going through some stretches for happy hips. Before you participate in any physical activity, make sure...
BEECH Part 1: Exercise & Health Hello Beech Community. Today we talked with Ellie an exercise physiologist and pilates instructor and she will be talking all about exercise and health. What is an exercise physiologist? An exercise...