Rare conditions are individually rare but collectively common and here at Manchester University NHS Foundation Trust (MFT) we are dedicated to supporting everyone who lives with a rare condition.
The size of our Trust, the breadth of our services, and our long-held record of providing patient-centred care for people with rare conditions puts MFT in a unique position to establish a new Rare Conditions Centre later this year.
Our 10 hospitals provide care for patients of all ages, many from diverse backgrounds, and often treating whole families. This means that our rare conditions care, work and research extends across all areas of MFT.
We are delighted to have the opportunity to bring this wide-reaching work together at the Rare Conditions Centre.
Our vision for better rare conditions care
By establishing the Rare Conditions Centre we want to address the challenges that people with rare conditions have faced in seeking timely diagnosis, treatment and support. But more than that, we want to improve their experiences and provide better care.
We will bring together our clinical and scientific experts, in both paediatric and adult care, to provide the best care for patients and families affected by rare conditions in the North of England and beyond.
“Having a space where patients and families who are affected by rare conditions can come together and meet with clinical experts, all in one place, will make such a positive difference to our healthcare experience.
It also will give us the opportunity to meet with others who have a lived experience of having a rare condition, creating a patient community where we can share and learn from each other.”
Nichola Garde – Chair of Rare Conditions Centre Patient Group
What will the Rare Conditions Centre do?
We want to promote the large portfolio of rare conditions services we provide to, first and foremost, improve the care and support of patients, and their families, affected by rare conditions. Not only do we want to enhance our work in recognised rare condition areas, but through this Centre we want to progress our care in other key developing areas, including support for families affected by rare conditions without a diagnosis.
By raising our profile and establishing the Rare Conditions Centre we can:
- improve training and education in rare conditions ensuring patients receive the most informed care.
- work with more partners to develop more research into rare conditions including patient trials and looking into innovative technologies and treatment.
- Further develop our rare conditions services through charitable funding.
We can’t do this alone
By establishing the Rare Conditions Centre it is not MFT’s intention to undermine, absorb or duplicate the many excellent and highly regarded local or specialist rare condition services offered by other NHS providers across the North. It is our ambition to:
- promote and strengthen the existing rare condition services provided by MFT
- support the development of new services where gaps exist within the country
- work with colleagues in neighbouring Trusts who also offer rare condition expertise.
Patient engagement group – Get Involved!
To support the development of the Rare Conditions Centre, we are setting up a patient engagement to encourage patient involvement and gain feedback into the development process. We are seeking to appoint a diverse range of service users to regularly meet, discuss and review the centre and its development.
If you would like to express an interest in being involved, then please let us know via the email below and we will contact you to keep you informed of the recruitment process:
Patient engagement group email: firstname.lastname@example.org