About Us

About Us

[vc_row css=”.vc_custom_1444739740198{margin-bottom: 0px !important;}”][vc_column][vc_column_text]There are over 6,000 recognised rare diseases in the world and approximately 3.5 million people in the UK are affected.  So although collectively rare diseases seem quite prominent, people with rare diseases can still experience a lack of expert knowledge and/or expert care.

Established in 2015, our aim is to supply care when it can’t be found through standard channels.

“Being told you or your child has a rare disease is not only devastating from the view that there is an illness, but this devastation is compounded by the knowledge that your care and hope are limited.  RareCareUK will provide care for now, hope for future and the ability to play a role in achieving this” – Dr Shara Cohen, Founder of RareCareUK

Care For Now

We are working towards

  • Establishing a database of rare disease charities and organisations so we can point patients in the right direction to get the specialist care and support they need
  • Where there is no specialist organisation for people to turn to, we aim to supply a trained nurse who will
    • understand the needs of people with rare diseases
    • help coordinate care
    • listen and provide support
  • Enable UK doctors and nurses to be more informed.  This will include
    • funding visits by UK doctors and nurses to specialist centres outside the UK
    • funding for specialists outside the UK to visit us

Hope For The Future

We will encourage scientific research programs which are lacking for many rare diseases, through our advisory board and other contacts and ultimately by providing grants.

What You Can Do

We have a lot to achieve and rely heavily on donations and fundraising.  You can find out more about our fundraising by clicking here or make a donation here. If you would like to get further involved in the charity itself and our work, please contact us by clicking here.[/vc_column_text][/vc_column][/vc_row]

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