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Primary immunodeficiencies: raising awareness

26 October 2009

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.”


Media Contacts:

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

Contact information:

GOSH-ICH Press Office: 020 7239 3125
Email: Coxs@gosh.nhs.uk
For genuine and urgent out of hours call speak to switchboard on 020 7405 9200

Notes to editors

About the Jeffrey Modell Foundation

The JMF was established in 1987 by Vicki and Fred Modell in memory of their son Jeffrey, who died from complications of Primary Immunodeficiency at the age of 15. The Foundation is dedicated to early and precise diagnosis, meaningful treatments and ultimately cures of Primary Immunodeficiencies.

For more information visit: www.info4pi.org

About The Royal Free Hospital

The Royal Free Hampstead NHS Trust is renowned for its specialist services including liver, kidney and bone marrow transplantation, renal, AIDS/HIV, infectious diseases, plastic surgery, immunology, paediatric gastroenterology, ENT surgery and audiological medicine, amyloidosis and scleroderma. We are a leading haematology centre and a major neuroscience base. We have associated internationally recognised research and training programmes. We are a member of the academic health science partnership UCL Partners, and we are one of six trusts to be short-listed for the Health Service Journal’s acute healthcare organisation of the year.

About Great Ormond Street Hospital

Great Ormond Street Hospital is one of the world's leading children's hospitals, and offers the widest range of paediatric specialisms in the UK.  With the UCL Institute of Child Health it is the largest centre for research into childhood illness outside the States and a leading centre for training and educating paediatric experts. It is the country's largest centre for paediatric bone marrow transplant and the leading centre for gene therapy in children.

About Baxter

Baxter International Inc. develops, manufactures and markets products that save and sustain the lives of people with haemophilia, immune disorders, infectious diseases, kidney disease, trauma, and other chronic and acute medical conditions.  As a global, diversified healthcare company, Baxter applies a unique combination of expertise in medical devices, pharmaceuticals and biotechnology to create products that advance patient care worldwide.

Great Ormond Street Hospital for Children NHS Trust is the country’s leading centre for treating sick children, with the widest range of specialists under one roof.

With the UCL Institute of Child Health, we are the largest centre for paediatric research outside the US and play a key role in training children’s health specialists for the future.

Our charity needs to raise £50 million every year to help rebuild and refurbish Great Ormond Street Hospital, buy vital equipment and fund pioneering research. With your help we provide world class care to our very ill children and their families.