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Our promise

The Society for Mucopolysaccharide Diseases is committed to fundraising in an honest and transparent way. 

In giving a voice to children and adults with 27 ultra-rare diseases means we are completely reliant on the goodwill and generosity of our supporters and donors to provide support and advocacy to over 1750 affected individuals and their families and carers and fund vital research.

As a fundraiser or donor of the MPS Society you are at the heart of everything we do and giving to us should be a positive and rewarding experience.

As such we promise:

To be honest and transparent about where your money goes and why we ask for donations or encourage fundraising

  • The MPS Society owes it to people who are suffering from MPS, Fabry or a related disease, many losing their lives in childhood, to encourage fundraising and accept donations. We will provide information about our finances and our charitable spend so you can see you are making a difference.

  • We are committed to keeping you informed about how you are helping to improve the lives of those affected by MPS, Fabry and related diseases so you know the impact your gift is making.

 We will protect your data

  • Your data is safe with us. We take our obligations very seriously and will never sell your data to a third party.

  • We will only ever contact you via methods you are happy for us to use.

  • You can change the way you hear from us at any time using the contact form on our website.

 We are respectful

  • We are particularly sensitive when engaging with vulnerable people and our Vulnerable Supporter Policy and practices reflect this.

  • We will not put undue pressure on you to make a gift and if you do not wish to donate we will respect your decision.

We are accountable

  • We will do all we can to ensure that our Fundraising and Communications Team comply with all applicable fundraising regulations.

  • We will always provide easy ways for you to contact us and our Fundraising and Communications Team is on hand to help answer any queries you may have.

  • If you are unhappy with anything we have done you can contact us to make us aware of a concern or complaint using our Feedback & Complaints Form. If we make a mistake we will apologise and do everything we can to put things right. However, if we cannot resolve your complaint, you may wish to contact the Fundraising Regulator.