If Rare Disease UK succeeds in its aims, we will improve treatment, care and support for everyone affected by rare diseases.
1 in 17 people will be affected by a rare disease at some point in their lives. The average patient receives three misdiagnosis, consults with five doctors and waits four years before receiving a diagnosis. Some people have to wait over 20 years to receive a final, correct diagnosis. Living with a rare condition can have a huge impact on mental health, patients report experiencing anxiety, stress, low mood, and emotional exhaustion. No family should have to wait 20 years for an accurate diagnosis. This is why we need your support.
Set yourself a challenge that people can sponsor you to do. Get active and walk, run, swim, cycle, skydive to raise money for Rare Disease UK, there are events all over the UK throughout the year and to suit all abilities. We are happy to support you in whatever challenge you choose individually or get together as a group.
The best way to raise money doing one of these challenges is to set up a Just Giving or a Virgin Money Giving page, that way people can easily donate to your event and find out what you are doing, just select Rare Disease UK as your chosen charity, donations come straight to us including any gift aid.
If you need any help finding a challenge to suit you then drop us an email: [email protected]
Organise your own fundraising
There are so many ways you can get involved in fundraising: coffee & cake sales, community quiz nights, host an event, hold a local collection, get sponsored. Fundraising events, however big or small are a great way to get people involved, spread awareness of Rare Disease UK and raise money for a good cause. Get your school, community group, local sports club or your workplace to join in too. We are open to any ideas and suggestions so get in touch: [email protected]
Make sure you shout it out on social media: we are on Facebook Donate, a really easy way to get your online community of friends to support your cause. You can create a Facebook Fundraiser page (click ‘Fundraisers’ in the left menu of your News Feed and follow the instructions) and add a Donate button to your page that means people can easily donate directly to SWAN UK.
Get your employer or employees involved in fundraising. Take on a group challenge event like a half marathon, hike or an obstacle race and raise money that way. We have plenty of team activities we can help organise for you. There have been some fantastic fundraising efforts from companies getting together to do a challenge as a group, plus it’s a great team building activity. Ask about match funding, get your boss to match whatever you fundraise as team to top up your donation.Or simply hold a cake sale, have a dress down Friday, silly hat day or have a collection box in the staff room to get people to donate their loose change.
Charity of the Year: many companies will nominate a charity of the year or make one-off donations throughout the year and businesses often chose a charity that has some personal significance to one of their employees. It would be great if you could nominate SWAN UK to your employer, we can help you with any application processes if necessary just email: [email protected]
Sending your money to us
Please send your donations to us as soon as you have finished your fundraising, here’s how to get the money to us:
Donate via the website: using a credit or debit card donate
Cheques: please make payable to Rare Disease UK or Genetic Alliance UK and send to Genetic Alliance UK, CAN Mezzanine, 49-51 East Road, London, N1 6AH. Please include a note to say how the money was raised with your contact details so we can send you a well deserved thank you letter !
Bank transfer: if you want to transfer your collected funds to us email[email protected] and we will send you the details.
Cash: Please do not send cash as we are unable to accept cash donations.
Download our donation form here- don’t forget to tick the box for GiftAid
Where your money goes
Money raised for Rare Disease UK will be used to support our vital work for patients, families and carers of those affected by rare diseases. It will help us to campaign on behalf of patients and their families, so they have access to timely care, treatment and the information they need to manage their rare condition.
£50 pays for one batch of printing of one of our patient experience reports for a parliamentary meeting
£100 pays for a family’s travel to speak at one of our Rare Disease Day events across Britain
£200 covers the cost of a school pack and materials to raise awareness or rare diseases with students.
£500 allows us to hold meetings to bring together rare disease patients from across the UK to ensure patient voice is at the heart of our campaign.
£1,000 pays for a rare disease video, helping to reach tens of thousands of people.
£2,000 pays for a parliamentary event to raise awareness of rare diseases – to ensure rare diseases are considered a public health priority by Government and decision makers.
Read more about how our work supports the rare disease community in our News & Events section.