Support for parents


Coming soon our 'Dad's support group initiative'

We will soon be launching a ‘dads and lads’ initiative. This will be a man only section of our website which is run by members of our community, where men can talk to each other about the challenges they face on the rare disease journey.


Run by our CEO, Bob Stevens this will be a space to communicate with other dads and lads, share your thoughts, hints and tips and will be a place where no one will be judged.  


We also hope for the members of this group to work together on fundraising initiatives, in order to give something back to the society.


If you are a ‘dad or lad’ interested in being involved in this group please contact or call us on 0345 389 9901.

Useful links


For advocacy

For adults and young people

For sibling support



It helps if you can talk openly and honestly with your child’s health care team about your family’s feelings, preferences, and concerns.

Our helpline is open 9-5pm


0345 389 9901

Out of hours support line open

5pm-10pm Monday-Friday and weekends: 07712 653 258 or

Contact us

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