Warm Hugs for Rare Condition Families

Every time a family receives the news that their child has been diagnosed with a rare condition, they receive a letter from the Office for Rare Conditions in Glasgow titled “A Warm Hug”. 

The letter, written by a parent whose daughter has two rare conditions, is designed to tell families that while their condition is rare, that doesn’t mean support has to be hard to come by. 

In the text of the letter, the author Rebecca says: “I have been where you are right now, several years ago, and remember all too well the tornado of feelings that came along with her diagnosis. Getting this news may have blindsided you and come out of the blue or, as it can be for many people, it may be the culmination of battling to be heard and searching for answers."  

“Each and every single thing you feel right now is normal and it's OK. It’s also OK to grieve and feel angry. While individually rare, rare conditions are collectively common and there are over 7000 known rare conditions. You are not alone.” 

Since 2017, Glasgow Children’s Hospital Charity has funded the Office for Rare Conditions, a body that advocates for and supports families dealing with a rare condition in the many forms that can take. The Warm Hug letter is just one way that charity funding helps families who have a child or children living with rare conditions.  

Shannon Mullen, Project Administrator at the Office for Rare Conditions, said: “It's to tell parents and carers that it will get better, it will become manageable, and there is support available for them. 

“There’s details of how to get in contact with us and where to find resources. It’s a nice, welcoming, Warm Hug. 

“This is given out via Clinical Genetics when they give a family a diagnosis, and it’s also on our website and on posters around the hospital too. In 2022 we know there were over 150 downloads of the letter.” 

Rare Disease Day takes place on the last day in February which, every four years, is on February 29, the rarest day of the year. Whether it falls on the 28th or 29th, the ORC celebrate at the Royal Hospital for Children with balloon displays and information stalls, funded by the charity.  

Other events range from Christmas parties where a patient community can come together to seminars for medical professionals featuring the world’s foremost experts on a specific rare condition. 

This year, we secured funding for a new staff member to join the dedicated ORC team. The Patient Navigator for Rare Conditions, the first of its kind in Scotland, will work closely with health professionals and our young patients to allow for the best healthcare journey possible. 

“We are delighted to have this new and exciting role. The Navigator will work with patients and families and help them access resources for treatments, medicines, financial support or extra care. 

“It will help families make informed decisions when it comes to the care of their child and we’re grateful for Glasgow Children’s Hospital Charity’s support and for helping us secure this funding. There has been huge demand for care coordination for children with rare conditions and we’re sure the new role will make a huge difference.”