To help promote Rare Disease Day and the fantastic work that is being carried out by so many charities, we have asked the founder and editor in chief of Rare Revolution Magazine to share with us her top tips on how we, the SME business community can play their part in supporting the many Rare Disease charities out there that need your help.
1 in 17 of the UK population live with a rare disease, that equates to around 3.5 million people. This means that as an SME, odds on, even if you are a micro-SME at least one of your team may be living with one or more, of over 6,000 known rare diseases, and if you are at the other end of the spectrum with a large-SME employing around 250, statistics say that as many as 15 or more of your team may be directly affected.
And these statistics don’t take into account those who are indirectly affected – many more may be carers for a child, partner, parent or other loved one who may be juggling their role in your SME, with their care commitments for their loved one’s complex and often life-limiting, rare health needs.
Living with a rare disease or being a carer can be a deeply isolating experience with little understanding about your disease in the general population, and even, often, among medical professionals. A rare disease is defined as affecting 1 in 2,000 of the population, but often the incidents are as low as 1 in 1,000,000 or even rarer! As an employer you may not even be aware that a member of your staff is living with the challenges of a rare disease or caring for someone at home after hours.
On the last day of February every year, the UK rare disease community joins the rest of a 300 million global community, along with families and friends, charities and advocates with one shared aim - to amplify the voice of rare disease. This special day known globally as Rare Disease Day aims to engage the world in important discussions centred around all thing’s rare disease.
With as few as 5% of rare diseases having an effective treatment or cure, research is right up there as a global priority but we know that as an SME, funding pioneering research may not seem achievable, but the good news is there is a whole lot you can do at a local level, and some small action on your part can make a BIG difference in supporting those affected in your own team and the wider rare disease community. Here are some simple ways you can #ShowYourRare for Rare Disease Day 2020 #RDD20.
Join the RARE Revolution:
RARE Revolution Magazine is a FREE, open source resource which looks to provide education and inspiration while empowering the community and a global audience to engage in the important conversation of rare. We are cross-condition and it is our mission to reach as many people and organisations as we can with our engaging and interactive, free subscription, digital magazine elevating the voice of rare disease.
Using your internal and external communications you can share this resource with your staff and clients making everyone more, rare aware as well as connecting your staff with a global community they may not know is out there, making them feel less alone in their personal rare journey should they themselves by affected.
Open up the conversation:
By opening up the conversation about rare disease in your own team, you as an organisation can be better placed to support your employees allowing them to thrive and be the best they can in their role. Often individuals may be embarrassed or anxious about informing employers about their rare condition. Imagine being one of only a handful of people in the country (or sometimes the only one) with your disease, and how difficult this may be to discuss with others. At RARE Revolution we adopt a flexible working directive for our staff to work successfully around their complex health needs or their carer commitments. This allows all our team to feel highly valued and to truly thrive. It can be as simple as facilitating late starts to allow for individuals who need medical regimes in the morning or who may simply not be at their best at that time of day, right through to 100% flexible or home working.
By opening up the conversation as a company-wide commitment you can ensure that your SME ethos brings out the best in your whole team.
Our own Business Development Associate, David Rose is the only known case diagnosed with his condition of occipital horn syndrome (OHS) in the UK. This is his story:
https://metro.co.uk/2020/01/30/can-isolating-person-uk-rare-disease-12155033/
Get involved on Rare Disease Day – 29th February 2020:
Over and above supporting your own team, there is much you can do as an SME to support wider rare disease efforts. Typically, rare disease charities, health organisations and some hospitals hold a range of activities in the week running up to RDD as well as on the day itself. Find out what activities are happening in your area and reach out to learn how you or your team can support them and get involved. What better way to live the RDD moto – Show you care #ShowYourRare
Not just for Rare Disease Day:
Why not appoint a RARE Champion who can help you connect with rare disease activities and organisations and help build ongoing relationships. Fundraising for charities that support low-incident diseases is inherently challenging, so small but ongoing support from your SME can make a huge impact! Can you provide runners and riders for fundraising events? Could you provide marshals at their events, or help with bake sales? There are many ways you can actively support their fundraising efforts.
The small, Kent based charity Teddington Trust previously formed a year-long partnership with Thermofisher and as part of their commitment of support Thermofisher provided manpower - with employees attending all events in that year which was invaluable. They then went on to sponsor running tops and hold a quiz night to raise money making it a successful partnership with lots of great memories for all. www.teddingtontrust.com
Share your expertise:
It’s not all about fundraising. Most rare disease charities operate on a shoe string and many struggle to secure grant or core funding due to their small size, so there are a number of practical ways you can utilise your SME’s expertise to support them by offering your skills on a pro bono basis. It could be legal advice, graphic design services, proof reading, web design, printing and more.
There are a number of websites out there to help match people with charities to donate their time, plus you can do your own local research and just call them up yourselves.
Check out the Rare Funding Team which is a dedicated rare disease platform for pro bono services https://www.rarefundingteam.com/
Spread the word and raise awareness:
If you have social media channels – and let’s face it, who doesn’t in 2020 –why not dedicate your channels this 29th February to raising awareness for rare disease. You can follow local and national charities and share their content or why not ask your staff to share their own rare disease experiences.
There are a host of social media assets and materials you can access here to share and you can have fun customising them with your own team’s activities: https://rarediseaseday.org/
To find out more about rare disease check out www.rarerevolutionmagazine.com and follow us on Facebook and Twitter @RareRevolutionMagazine
Nicola Miller, editor-in-chief, RARE Revolution Magazine and Chair of Trustees at Teddington Trust SCIO (rare disease charity).