Your Gift: Support for Rare Conditions
Learn how your gift is making a difference to young patients and their families
Rare conditions are chronic and often, but not always, life-threatening. While some conditions are common and affect a number of people, the vast majority will affect far fewer, sometimes a handful or even a single person in the whole of the UK.
Having a child with a rare condition can be isolating, with families often feeling like they have no-one to turn to for support.
Thanks to the Office for Rare Conditions funded by Glasgow Children's Hospital Charity, thousands of families now have access to groups which provide practical and emotional support to cope with the challenges of having a child with a rare or undiagnosed condition.
"Sometimes accessing support can be difficult when your child has a condition that is so rare. People don’t understand what it means for your child and your family, so to have Glasgow Children's Hospital Charity's support makes a big difference."Parent
Chloe was born with a rare genetic condition called Mowat Wilson Syndrome (MWS) which is shared with only 5 other children in Scotland. The condition means that Chloe has many medical complications and developmental delays, leading to many challenging hospital stays.
Chloe cannot walk fully independently and is completely non-verbal, so relies on her family for one-to-one support. Her parents haven't given hope that one day they will hear her little voice say 'mama' & 'dada'.
Thanks to our Office for Rare Conditions, Chloe's family have had the opportunity to meet the 5 other Scottish families affected by Mowat Wilson Syndrome, which has provided them with invaluable support.
"The Office for Rare Conditions is such a valuable resource for family like ours - not only for the fun stuff like their family events, but also for the ‘behind the scenes’ work they do raising awareness. They also provide a lot of practical support to families and it has given us the opportunity to meet others in similar situations."
CLARE, CHLOE'S MUM
Your Support Matters More Than Ever
Your gift will allow us to ensure that we can continue being there for children living with a rare condition by helping to fund important research, family days and support for these children and their families.
Our Office for Rare Conditions and Paediatric Research are just some of the many projects that exist thanks to funding from Glasgow Children's Hospital Charity. This along with our Play Programme, Family Support Service, Financial Inclusion Service, and Bereavement Service, all rely on the generosity of our supporters to continue.
If you can, please consider joining our caring community of regular givers with a monthly or quarterly donation to ensure that we can continue being there beyond COVID-19 for those who need us most. Thank you.