Having made a big stride forward with our website we are keen to ensure that it remains relevant, informative and up-to-date.
Anyone can contribute.
First the little things
If you come across something wrong, such as a typo or a broken link, please bring this to our attention by emailing the Webmaster.
Have you had a lightbulb moment?
Whilst we have added a lot of features and content to the generic part of the website, we know that some of the GSDs need updating and having more content added. We are working with the GSD coordinators to achieve that.
If you have ideas about what further information would be helpful, please in the first instance liaise with the coordinator for your GSD. It might be links to useful papers, websites or YouTube videos. Or you might feel a need for more information on managing your condition, finding a relevant specialist clinic, understanding what benefits may be available, being directed to suitable social media channels, or whatever else you feel would help others as well as yourself.
News or generic suggestions
We have an insatiable hunger for news items, so if you have one to suggest, or have ideas and suggestions for the more generic parts of the website, please do get directly in touch with the Webmaster.
We want to do whatever we can to meet the needs of the GSD community.
We also need great images
To help keep the site lively and interesting we need very many images. We would really like to have more of people with GSDs, whether singly or in a group, at home or in hospital, relaxing or engaged in an activity.
In the first instance please email the Webmaster to explain what you have available.
If submitting photos with your contribution, please read the notes below about photos.
Notes for contributors
The headline needs to be about 4 words long and maximum of 8 words. The summary can be 15 to 20 words. Those two are what appears in the scrollable list of news items on the home page. The main text of the story can be about 300 words. Please write in the third person. We need an image that can be cropped to a ratio of 1 to 1.6 (e.g. 500 px deep by 800 px wide). Please also read the note on images.
Personal stories from patients
If you are British or live in the UK, have a diagnosis of one of the GSDs and have an interesting story, then we would like to hear it. Patients‘ stories are a great help to newly diagnosed people. Please write in the first person. We require a length of 400 to 600 words. Text can be submitted in MS Word, or in a plain text file. We need a “head and shoulders” photo of the author which is suitable to be cropped to a square, plus one or two other photos relevant to your story, or of you in some activity. They can be landscape or portrait shape. Please also read the note on images.
Ideas for more information on your GSD
If you feel that there is something extra which is needed within the section on your particular GSD, in the first instance please contact the GSD coordinator and discuss the matter with them. If appropriate, they will then develop the idea and pass it on to us. If there is no coordinator for your GSD, please contact the Webmaster directly.
Medical terms for the glossary
If you come across a term that is not in our glossary and you feel should be, please bring this to our attention.
Photos and other images
We prefer photos, but if those are not appropriate then maybe send us an image such as a screen shot of a website, a scan of a book cover, or something else that is the subject of the story. In photos, if people are identifiable you do of course need to secure their permission. Digital photographs are the best and need to be of medium to high resolution. When it comes to sending them, please email (don’t send through Facebook, Instagram, etc) and give us the actual photo files – do not put them into an application such as Word.
Our right to edit submissions
Please bear in mind that we will edit all submissions. For “Personal stories” we will give you an opportunity to check the final text.