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!
Heather was diagnosed with Fibrous Dysplasia at 10 years old. She has had multiple operations throughout her life and manages her own chronic pain. She also has problems with her thyroid, fatigue and spine. Heather joined FDSSUK as a member around 10 years ago, hoping to learn more about the disease and meet other patients. Heather now volunteers for FDSSUK and is the secretary. She is very passionate about raising awareness of the disease, and enjoys being part of a community that allows her to interact with other patients and carers. This is her lockdown story!read more
When it comes to the inherent nature of drugs, we believe that they aren’t inherently good or inherently evil; it’s the context that matters and defines their usage. See how the drugs, thalidomide and sodium valproate, have danced between being called Dr. Jekyll and Mr. Hyde, depending on the context of their usage, and discover the lessons learned from this tale of two contexts.read more
This week’s blog is written by Ashley Clarke. Ashley takes us back to when her dad was first diagnosed with Huntington’s Disease (HD), and reflects on her journey from daughter and carer to HD activist and lifestyle blogger. See how she’s living life in HD!read more
On 23rd June, we hosted a three-day social media workshop that sought to give patient groups the experience, confidence and skills needed to fully utilise the power of social media.read more
We’re so excited to introduce our new Marketing and Engagement Manager, Blayne Baker, who joined the Findacure team this week! Find out more about Blayne here.read more
"A cheap and widely available drug can help save the lives of patients seriously ill with coronavirus." This was the lead headline on a BBC news story a few weeks back, which proclaimed Dexamethasone as the first proven life-saving drug for coronavirus. Put simply,...read more
This week, I celebrated my fourth year at Findacure. What a whirlwind it’s been! In that time, I’ve held three job titles, worked with seven different colleagues, planned well-over 30 events, and changed my hair colour more times than I can count. In this week’s blog, the team asked me to look back at my first presidential term four years and share some of my hopes for the next.read more
This week, we take a look at the Findacure RareChat sessions that have been running throughout lockdown that offer a chance for patient group representatives to have informal chats, network and share resources and experiences.read more
This week’s blog is guest written by Robyn Silverton, a holistic therapist and trained physiotherapist who also has the rare condition of PK deficiency, a haemolytic anaemia of which there are 1 in 200,000 patients worldwide. Robyn shares some of her story and what keeps her positive in the face of the challenges associated with having a rare disease.read more
Every two years EURORDIS (Rare Diseases Europe) hold a large international conference focused on rare disease patient advocacy called The European Conference on Rare Diseases (ECRD for short). It is an event we have all being building up to for months, as it brings...read more
From the 4th to the 6th of May we ran a three day online workshop focusing on the theme of ‘setting yourself up for fundraising success,’ with the ultimate aim of providing expertise in how to transition patient group funding away from community fundraising to applying to grants and foundations and accessing corporate funding.read more
Today's guest blg is written by Polly Moyer, Co-founder of the Action for Mal de Debarquement Syndrome UK facebook page and founder of the Familial MdDS facebook group. Here Polly gives a perspective on the pandemic from someone with Mal de Debarquement Syndrome...read more