Making the RARE voice heard
When the time comes for companies to choose their charitable beneficiaries for the coming term, we know only too well in the rare disease community that maximising publicity is often on their minds.
When I recently asked a large power supplier if they ever considered working with smaller charities for their, three year charity commitment, they said "no, we only ever consider from the big charity groups". When I asked why they were quite clear - maximised publicity!
Although I understand this, it did get us thinking. From an investment point of view, small charities make better financial sense. With little or no overhead costs, and often run passionately by unpaid volunteers your money can go a lot further and significantly affect the lives of the people these charities support.
This is a topic we are going to cover in much more detail in the Spring edition of Rare Revolution Magazine - RARE Corporate Responsibility - Why choose Rare, but until then I thought I would share with you a great way your company can make a great investment and directly help children.
Did you know if your company sponsors one of Teddington Trust's Little Ted goes to school... primary education resources your can nominate the school that receives it?
This cross-curricular pack delivers key messages in inclusion, genetics, rare diseases and sun safety. Don't think this is relevant in schools? 1 in 17 people live with a rare disease and 50% are under 12. Seven people a day die in the UK from skin cancer and it is the fastest growing cancer in the 15 to 35 year age bracket.
PLUS every funded school pack allows Teddington Trust to send their BMA award winning patient education Little Ted pack to a child living with the rare genetic disorder Xeroderma Pigmentosum*.
So let's just take that all in for a minute...
For a company investment of £150 you can help educate an entire primary or early years education setting on a range of health and well-being, science and social topics AND help a young child learn about and how to manage their own complex rare disease!
This could be the best company investment you have made all year!
Visit www.teddingtontust.com/bearsforrare for more information
or email firstname.lastname@example.org
I have not long finished a Skype interview, for our Dec issue, and as always, it was an absolute honour.
We feel very privileged to be in a trusted position, where families can approach us about sharing their own unique RARE story. To sit and listen, to a mix of common shared struggles and unique emotional and physical challenges, is a privilege we don’t take lightly.
We look forward to putting a lot of love and commitment into turning this interview into a feature for our ULTRA RARE edition.
To quote the words of a song, which aptly reflect our vision of RARE Revolution Magazine:
“You be the book, I`ll be the binding,
You be the words, I`ll be the rhyming”
Extract "That's Whats Up" Alex Ebert
Photo credit Copyright Nicola Miller 2016
Rare Revolution Editor