Push to raise awareness of primary immunodeficiencies (PID) as prestigious US foundation supports London diagnostic centre.
Today the Royal Free Hampstead NHS Trust and Great Ormond Street Hospital For Children NHS Trust announced the opening of a Jeffrey Modell Foundation Diagnostic Centre for primary immunodeficiencies in London.
The centre, based at the Royal Free Hospital and Great Ormond Street, is one of only 55 in the world and the second to open in the UK.
Primary immunodeficiencies (PID) are a group of chronic conditions that affect the body’s immune system. Adults and children affected by PID may have little or no defence against infections. They can experience a number of common health problems such as sinus infections, pneumonia, ear infections, colds and skin disorders. PID is often undiagnosed because it can present as these common illnesses. There are more than 150 primary immunodeficiencies that have been identified to date. They range widely in severity and are often characterised by infections that can be recurring, persistent, debilitating and chronic. It is difficult to exactly determine the number of people suffering from PID in the UK, but it ranges from between 1 in 500 to 1 in 25,000.
The new Jeffrey Modell Foundation Diagnostic Centre, based at the Royal Free Hospital, is sponsored in part by Baxter Healthcare, a leading provider of life-saving therapies that develops, manufactures and markets treatments for PID. Baxter and the Jeffrey Modell Foundation are long-standing partners in the efforts to raise awareness and increase diagnosis on a global scale. In addition to establishing diagnostic centres around the world, Baxter and JMF have collaborated to raise PID awareness in the US, Europe and Latin America.
Prof Bodo Grimbacher, a consultant immunologist at the Royal Free Hospital, said: “The opening of the centre will make a huge difference to patients. We will raise awareness of the condition and reach out to people who are not yet being given the help they need, and changing their lives for the better. It is a very prestigious thing to be designated a Jeffrey Modell Foundation Diagnostic Centre, and recognition of the groundbreaking work being carried out at the Royal Free and Great Ormond Street.”
Prof Adrian Thrasher, from Great Ormond Street Hospital, said: “Immunodeficiencies are serious, often life threatening, and often undiagnosed. Care for children needs to include better and earlier diagnosis, on the one hand, and developing new treatments on the other. We also tend to forget that immunodeficiencies continue into adult life and the development of a University College London (UCL) centre is an important area of clinical care and research. We are especially grateful to the JMF for adding their support to this venture, and look forward to working with them closely in the coming years.”
Vicki and Fred Modell, the centre’s benefactors, attended the official opening of the centre today. They are co-founders of the Jeffrey Modell Foundation (JMF), which is named after their son, who passed away aged 15 in 1986 from complications of primary immunodeficiency.
“We are thrilled to collaborate with the Royal Free and Great Ormond Street hospitals,” said Fred Modell. “Experts have estimated that many cases of PID remain undiagnosed in the UK, and our goal is to give every adult and child a chance to lead a healthy, normal life.”
“There is a large underdiagnosed population of children and young adults suffering with these diseases, keeping them from enjoying a full life,” said Vicki Modell, Co-founder of the JMF. “Their illness interrupts their activities, detours their plans and shatters their dreams.
“We are proud to partner with the Jeffrey Modell Foundation, the Royal Free Hospital and Great Ormond Street to help provide treatment and raise awareness for primary immunodeficiency, “ said Harry Keenan, Baxter UK general manager. “This centre will help improve the lives of many patients living with PID.”
Royal Free: Soraya Madell, Communications Manager: 020 7830 296
Great Ormond Street: Stephen Cox,Head of Communications:020 7239 3119
Jeffrey Modell Foundation: Diana Puente +1 (212) 634 0810
Baxter: Kirsty Langton, Communications Manager: 01635 206513
GOSH-ICH Press Office: 020 7239 3125
For genuine and urgent out of hours call speak to switchboard on 020 7405 9200