Blog

We produce a weekly blog to share what we’ve been up to, stories from the rare disease world, interesting info on our projects, and more.

Every week we put our fingertips to keyboards to bring you, our community, stories of what we’ve been up to, things we’ve found interesting, and updates from our projects. Released every Friday, our blog is also regularly written by guests who openly share their experiences. We hope you enjoy reading our little instalments!

If you would like to share your own story on our blog, please contact Taryn, our Communications Officer: taryn@findacure.org.uk

Let's Talk Tyrosinaemia

To mark last week's National Metabolic Disease Awareness Week, Swedish Orphan Biovitrum (Sobi) has launched a new website called "Let’s Talk Tyrosinaemia". The website is designed to enhance the portfolio of support materials available for parents and carers of...

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One rare condition – many common issues

[row] What are the multiple challenges of having an invisible condition, and how can greater awareness help? To mark the beginning of MdDS awareness month, our friend Polly Moyer has some useful insights to share. June is the awareness raising month for the rare...

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Collaborating for Cures

Rare diseases are leading the charge in research when it comes to collaboration. The unique selling point of this group of conditions is the willingness of all stakeholders to work together to achieve better health outcomes for patients. This is something we champion...

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Treasuring our volunteers

Volunteering for a small charity like Findacure can make a big difference to our overall productivity. We are currently searching for volunteers to help us with a range of activities, including marketing, design, communications, fundraising, project organisation,...

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Top tips from the Facebook experts

[row][two-third] Facebook is social media’s world leader. With 1.65 billion users, the platform offers the potential to reach an enormous and varied audience. You only have to look at No Make Up Selfie or ALS Ice Bucket Challenge, which raised $2.8 million and...

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How to sustainably develop your charity

In the rare disease field, patient groups play a crucial role in supporting patients and motivating research into their overlooked conditions. However, research from Global Genes found that half of the thousands of rare diseases do not even have a disease-specific...

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Black boned and not alone

[row][two-third] We at Findacure spend a lot of time advising patient organisations how they can better their patient outreach and support. It isn’t often though, that we get to attend a workshop targeted at patients with a specific rare disease. To better understand...

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