Rare Disease Day 2018: On February 28, 2018 there are campaigns worldwide to draw attention to the Day of Rare Diseases. #ShowYourRare is the motto this year. People all over the world are called upon to show that they are fighting together with affected people, for example for networked care and research. Just like Anne from “being x times different”. Here she presents her fundraising campaign and the book "Like You and Me: A Journey to the Rare Diseases of the World" …
Like you and me: A journey to the rare diseases of the world
Mini Schnauzer bitch Cuba starts an adventure with a hot air balloon. And shortly afterwards makes a belly landing. She lands on Otter Ups, which is an unusual one size has black nose. As Cuba learns, the reason for this is an immunodeficiency. So that her new friend is no longer the only one who looks different, Cuba now has a black nose. Together they continue the journey. Cuba and Ups get to know sloth girl Cattleya and her myasthenia, Lama Luc’s cystic fibrosis, elephant girl Ruth with Moyamoya, as well as Doris Giraffe and her glass bone disease.
They meet Flamingo Steffi with Lupus disease, Fisch Flores with Ichtyose, and rhino child Boris with his scleroderma. They encounter parrot kojo with his amyloidosis, chameleon kamala with hemophilia and koala girl Josephine and her narcolepsy. They make friends all over the world, learn more about animals with their diseases and want to help. At the end of the exciting journey, everyone unites that they have a black nose. Cuba with ups by her side is hopeful and curious about further adventures …
© Orphanhealthcare, Bohem Press
11 of not so little
There are over 6000 rare diseases worldwide. These are called “rare” in the EU if no more than 5 in 10,000 people live with them. Be exemplary in "Like you and me: a journey to the rare diseases of this world" * 11 rare diseases of which, with Cuba’s support, are described in moving and lifelike stories. There are also explanatory boxes for each of the 11 diseases.
Encourage and educate – the children’s book by the Swiss Orphanhealthcare foundation in collaboration with the comic artist Florian Jacot is designed to raise awareness and encourage people to approach affected people. The message: It is worth learning more and, in addition to differences, recognizing similarities or creating with black noses.
© Raresiseaseday.org
Makes a mark for the rare
On the occasion of the Rare Disease Day, the international day of rare diseases – this year on February 28 – people around the world are called upon strongly to make for the rare. This is exactly what I want to do with it: In line with the motto #ShowYourRare, I would like to use a blog parade to draw attention to the need for research and to collect donations in an auction for the multifaceted work of the ACHSE association (Alliance for Chronic Rare Diseases). Click over there "To be different x times". Show yourself and make a mark!
Book data:
Author: Orphanbiotec Foundation
Illustrator: Florian Jacot
Publisher: Orphanhealthcare, Bohem Press
Release year: September 27, 2013
Age recommendation: from 4 years
ISBN: 978-3-8558-1531-9
Image source: © Orphanhealthcare, Bohem Press
Do you like the book? You can buy it here:
About Anne
Anne blogs on "be different x times". Her daughter was born in June 2012 born with Ullrich-Turner syndrome. When people see her, they don’t realize that she is "x times different". The UTS is not the focus, but it is part of their lives. With the conviction that she can only accept things that she knows and understands, Anne deliberately deals with the UTS and meanwhile in general with rare diseases, inclusion and disabilities. For her, the pluralism of being human is paramount. And her family is room for amazement, imagination and impulses.
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