Welcome to RARE a blog dedicated to the rare disease industry by Laura Hulley, Recruitment Consultant at SciPro.
When I started working within the rare disease area, I knew very little about the number of patients, the number of diseases and the challenges faced around awareness and diagnosis all over the world. I was completely oblivious to the fact that there are between 6000 – 8000 individual rare diseases and that’s only including the ones we know about. With that being said, there are so many great researchers, clinicians, pharmaceutical and biotech companies and patient organisations all working together to increase awareness and diagnosis, and to deliver specific therapies to those who need it.
On reflection of this, I wanted to do my part to highlight some of the people working in this industry and the amazing efforts to increase awareness and help patients within the community and so I introduce to you my new blog ‘RARE’.
Rare Disease Day 2021
For my first post, I thought what better way to start than to talk about Rare Disease Day 2021 that took place on Sunday 28th February. Rare Disease Day was launched in 2008 in Europe and is a day dedicated to raising awareness with events taking place all over the world. It is held every year on the last day of February – the month with a rare number of days – and according to the official Rare Disease Day website (https://www.rarediseaseday.org/) a whopping 495 events took place across the world this year!
Show Your Stripes
As well as events organised by EURORDIS and partner associations, pharmaceutical companies across Europe took to social media to show their support in the #ShowYourStripes campaign. The official symbol of rare disease is a zebra due to the rarity of their stripes and to urge clinicians to think outside the norm and into the realm of rare.
Rare disease company, Orphazyme, posted about their colleagues making 7 snow angels or 7 roles in the snow for the 7000 rare diseases and taking the “ice bucket challenge” to a new level where their Head of Clinical Safety & PV took a dip in an ice-cold lake. Alexion Pharmaceuticals helped connect the general public to patients by encouraging people to create postcards and a video message wall, giving people the opportunity to learn about rare diseases. Here I have only mentioned two companies but for the entire week leading up to Rare Disease Day my LinkedIn feed was scattered with companies such as Recordati Rare Diseases, Chiesi, EUSA Pharma and so many more, posting about individual rare conditions, reaching an extensive network and doing their bit to educate us all.
SciPro does the Marathon!
Here at SciPro, for Rare Disease Day this year, we decided to focus on raising awareness within our company across all of our brands. Our Associate Director, John Morkus, delivered a short talk and of course we were all showing our stripes in support. We have also pledged to raise money for the manufacture of the second SciPro Wizzybug, produced by Designability, an electric wheelchair for physically disabled children living with cerebral palsy, spina bifida, muscular dystrophy and any other condition that may hinder the child’s ability to walk. To do this, SciPro will be taking part in a 26 mile walk in September 2021 and we need your support and encouragement! Our JustGiving page is now live so please do take the time to sponsor SciPro on our walk to raise money for the Wizzybug, any donation or support is really appreciated!
For this first blog piece, I wanted to highlight some of the many activities going on throughout the world and the #ShowYourStripes campaign for Rare Disease Day but it is important to remember that these efforts are not for one day and continue throughout the year.
Throughout this blog series, it is my intention to highlight some of the work that goes on across the industry, and of course if there is a particular topic that you would be interested in hearing about then please feel free to let me know!
For more information about rare disease check out some of the websites listed below and please remember to sponsor SciPro on our quest to build another Wizzybug!
Laura Hulley - firstname.lastname@example.org