About Rare Disease Research Partners
Our company was founded in 2012 to boost research and improve access to care and treatment for MPS and wider rare disease communities. Starting with just two staff supporting patients taking part in clinical trials, we’ve grown and diversified to offer a comprehensive range of services for pharmaceutical and patient organisation clients.
We put patients at the centre of our business to deliver unique research insights, outstanding support for people taking part in clinical trials and access to new treatments. We help patients with reimbursement, and provide expert rare disease communications.
Who we are
Rare Disease Research Partners is a wholly owned, not-for-profit subsidiary of the UK-based Society for Mucopolysaccharide Diseases (MPS Society). We reinvest any surplus made from our services to support the Society’s mission to transform the lives of patients through specialist knowledge, support, advocacy and research. Since its creation in 1982 the MPS Society has become a leading organisation supporting patients with rare metabolic diseases in the UK. Mucopolysaccharide (MPS) diseases are a family of around 40 rare, life-limiting disorders that can affect both children and adults.
Mucopolysaccharides are long chains of sugar molecules that help to build bones, cartilage, skin, tendons and other essential body parts.
People with MPS diseases do not have enough of the enzyme needed to break down used mucopolysaccharides, which can then accumulate within cells to cause progressive damage.
Globally, the diseases are known to affect approximately one in 25, 000 births, although with mild instances often going unrecognised or misdiagnosed, the true incidence is likely to be much higher.
Our philosophy
Patient focused
We maintain a unique and specialised understanding of patients and their rare diseases in order to deliver an outstanding service, to our customers, that ultimately, benefits patients
Collaboration
We build strong relationships with partners working in the rare disease field in order to achieve the best for all patients
Expertise
We believe that professional knowledge can only take us so far and we take the time to understand the individual needs of patients, their families and their disease
Innovation
We are proud to be the first service of its kind to have grown from a patient organisation – the MPS Society UK. For over a decade, we have led the field in enabling rare disease patients
to attend and remain on clinical trials, and
access treatments
We serve the rare disease community.
We do this by applying the knowledge and experience gained in MPS and other lysosomal diseases and delivering a specialised service to a wider community.
Working together
We are always happy to talk through your future projects and how we may be able to help.
Please contact us for an informal discussion
