Your Questions, Answered

Frequently Asked Questions

If you or someone you love has been affected by a rare disease or a genetic condition, you’re sure to have lots of questions that we hope you’ve been able to answer by browsing our website. However, you may be unsure of how we operate or what you can do to get involved in supporting us. With this in mind, we’ve created a useful FAQs page answering some of the most commonly asked questions we receive.

Covering everything from sourcing further information to finding out how to contribute to a discussion on rare disease policies, you should find the answer to most of your questions here.

If you have a question that hasn’t been covered in the FAQs above or you require further information, please contact us. Alternatively, head over to our community forum to see if your question has been answered there.

Rare Diseases FAQs

Can I take part in rare disease research?

We are not currently running or participating in any particular studies at present. However, we will share information regarding future opportunities and recommend signing up for our newsletter to stay abreast of these announcements.

Where I can find more information on rare diseases?

There are a number of websites that can provide additional information on rare diseases. We recommend visiting the following sites to learn more:

I could not find a rare diseases in your database; can I suggest one?

We are always looking forward to expanding upon our database. If you noticed that we have no information on a particular disease, please drop us a line and we will review your request.

I have found a mistake/missing reference on one of your pages – what should I do?

We are always trying to provide the most accurate information possible. However, mistakes or omissions can happen. Please email us with your comments and provide a link to a page in question. We will try to address your concerns if deemed valid.

How can I contribute to a discussion on rare diseases in the South West?

We are planning to have a regular round table where all stakeholders are invited. If you would like to hear about upcoming events, please register for our newsletter.

I like what you are doing, can I support your work?

Yes, absolutely. The University of Plymouth is a charity and you can direct your donation towards our work on rare diseases. You can make your donation here – don’t forget to gift aid your donation if you are able, which means your gift goes even further.