Giving Gaucher a Voice

Amplifying the voice of the Gaucher community

Share Your Story

In the lead up to International Gaucher Day, we would love to hear your story – shining a spotlight on the community. Submit a short video below telling us what Gaucher means to you, and don’t forget to post it on social media, and tag CENTOGENE with the hashtag #WEAREGAUCHER.

By clicking “submit”, you grant CENTOGENE GmbH permission to use your story, video, artwork, symptoms and other medical information as part of our ongoing programs to increase rare disease awareness. Therefore we will publish the story, video, artwork, symptoms and other medical information, and country (insofar as provided) together with only the first name, on our website, on our social media profiles (including but not limited to Facebook, LinkedIn, Twitter, YouTube, Xing), on DVDs, in videos, in print (including but not limited to brochures, flyers, posters, magazine contributions), other publications on the internet as well as during the IGD2020 Digital Conference on 01 October 2020. We will never publish the last name, email address or phone number. The legal basis for the processing is Art. 6 para. 1 (a) and Art. 9 para. 2 (a) GDPR. The personal data submitted may be used to the extent described, free of charge, without limitation in terms of time, geographic area or content and in association with other media, texts, image and film works. We may change, duplicate or supplement the recordings (e.g. use of excerpts, montages, photo-technical or digital alienations, colorations and/or representations in black and white) as long as your personal rights do not conflict with this. We will never publish use your last name or e-mail address. The legal basis is Art. 6 para. 1 a) GDPR. You can withdraw your consent with regard to the future at any time. Further information can be found in our Data Protection Policy.

Meet Zile

Zile is a happy, bright boy who loves to play cricket with his friends and swap the latest trading cards from his favorite comic series.

At the age of six months, Zile was noticeably pale, and often had high fever as well as some bumps on his stomach. He had unfortunately already lost two older siblings who had similar symptoms similar to his. His eventual diagnosis: Gaucher disease.

Zile’s dream: to be a role model for his two younger siblings, who also suffer from Gaucher disease.