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Patient groups: an unstoppable force for good

rare diseases patient groups
rare diseases patient groups

Patient groups are becoming increasingly important not only to those affected by rare diseases but in the advancement of treatments and research, too. Beverley Power, Secretary and a Trustee of CDH UK, shares her experiences.

Groups offer support to families

CDH UK was first established in 1996 following the birth of founder Brenda Lane’s baby, it was primarily set up to offer support to other families who had been affected by Congenital Diaphragmatic Hernia, a rare condition whereby the diaphragm fails to form correctly in a baby, causing the abdominal contents to herniate into the chest cavity, which in turn prevents the lungs from developing properly.

With no website or official status, the organisation communicated primarily via the phone or letter with families of patients. As demand for support grew, it became apparent that obtaining charity status would help CDH UK not only support more patients, but also raise awareness of the condition and even advance research. In 2004 it became a registered charity and has continued to go from strength to strength.

Research for CDH treatment is a main focus

“Our primary function is to support anyone affected by CDH,” says Mrs Power, who got involved in the charity after her Grandson Finlay died of the condition when he was just eight days old. “But the secondary focus is research. CDH has roughly the same incidence as conditions such as cystic fibrosis and spina bifida, and yet it’s still relatively unknown. It seems like a forgotten rare condition.”

In 2013 the charity submitted a petition to government with more than 38,000 signatures, advocating for increased research into the condition. “They came back with answers that fell short, but ultimately if we are serious about change we need to be looking at ourselves to instigate research, so we set up the Research Fund,” explains Mrs Power.

Over the past few years, members of the charity have been speaking at conferences and events to gather interest and investment from within the medical community and wider afield. CDH UK has now raised half a million pounds and is a research partner with Sparks, a charity that advocates and funds pioneering children’s medical research, in order to advance research into CDH.

It has been hard work setting up the charity

The organisation has come a long way in the past 20 years, but Mrs Power is keen to dispel the myth that starting a charity is easy. “A lot of people have a romantic notion of starting a fund, but it’s incredibly hard work. We are currently run entirely by volunteers and our office space is donated by a local business. In some respects you have to run like a business in order to get things done.”

Like many other patient groups CDH UK is fast becoming a key source of data and information, with more regular contact with individual patients and their families than any one clinic or hospital.  As medical science continues to evolve, Mrs Power hopes that knowledge gained by the organisation will be put to good use to find improved treatments and even a cure for the challenging condition.

CDH awareness month is June and CDH awareness day is 28th June.

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