Highland Marketing help raise awareness of rare genetic disorder

Highland Marketing, the specialist healthcare marketing and PR agency, is supporting a charity in its bid to raise national awareness of a rare childhood genetic disease called Wolfram syndrome.

Highland Marketing has been tasked with generating media coverage for Wolfram Syndrome UK Support Group in order to attract donations to fund research into the condition and raise its awareness amongst healthcare professionals to drive faster diagnosis rates. PR activities will be supported by a social media campaign with the aim of engaging and generating support amongst the medical community and the public.

Wolfram syndrome is an extremely rare and often misdiagnosed genetic disorder, first described in 1938 by Dr Don J. Wolfram MD, which affects the brain and central nervous system. It causes diabetes, blindness, deafness as well as a slowly degenerating brain disease, and affects about 1 in 500,000 children in the UK. There is no cure and no treatment to stop or slow down the course of the disorder, and the disease is life limiting.

The charity which offers support to sufferers of Wolfram syndrome was set up by Tracy and Paul Lynch whose 13-year-old daughter Jennifer has been diagnosed with the condition. It is not recognised by doctors or the public, which meant a prolonged misdiagnosis for Jennifer and very little information on how to manage and live with the condition.

As a result of this and with a determination to help others, Tracy and Paul decided to set up a support group for those in similar circumstances. The group offers sufferers, their families, and friends an online forum and regular events to meet and share experiences, and a website with resources, including research papers, for those who would like to find out more information on the condition.

Tracy Lynch, Chief Executive of Wolfram Syndrome UK Support Group, said: “It is a very lonely and distressing time when you or a loved one first receive the diagnosis of Wolfram syndrome. Imagine if your child was blind, deaf, or had diabetes – or all three for years and no one could tell you why.

“Our support group brings people together to share their experiences of Wolfram syndrome – but this is only the start. We believe there are more sufferers out there who are going through the same process as we did – which is why it is so important to raise awareness of the condition on a national level.

“We’ve valued Highland Marketing’s ideas and enthusiasm to helping our cause. We were introduced to them by recommendation, and their team’s experience and knowledge of healthcare has certainly made it easier for us to articulate the challenges that the condition faces. We’re looking forward to working together on this campaign.”

Mark Venables, CEO of Highland Marketing said: “When we heard the powerful, emotive story of how the Lynch family coped with the diagnosis of Wolfram syndrome, we wanted to support the cause. Our skills, experience, contacts, and knowledge of the healthcare sector means we are able to help support the group with the exposure it needs, and more importantly, it deserves.”

You can follow the charity on Facebook and Twitter @WolframSyndUK, and show your support by sharing the campaign and donating at the Wolfram Syndrome UK website: http://www.wolframsyndrome.co.uk/

ENDS

About Wolfram Syndrome UK Support Group

• Wolfram Syndrome was first described in four siblings in 1938 by Dr. Don J. Wolfram, M.D
• 100 people are thought to have Wolfram Syndrome in the UK, but many more could be misdiagnosed
• Wolfram syndrome is a rare disease, one of 5,000 known rare diseases; however, collectively, these diseases affect about one in 17 of the population

For further information visit: http://www.wolframsyndrome.co.uk/

About Highland Marketing

• Founded in 2002, Highland Marketing is a leader in tailor-made and flexible PR, marketing, and communications solutions. It operates in the UK and internationally and has a detailed understanding of the healthcare market.
• The company has a dedicated team of skilled and experienced people all with considerable knowledge and experience within their field.
• It also offers customised business development support geared to help grow client sales.

For further information contact Mark Venables on +44 (0) 7973 172894 or markv@highland-marketing.com or visit highland-marketing.com

You can also follow Highland Marketing LinkedIn or follow us on Twitter.

Media contact:
Marta Sieczko, Highland Marketing
Phone: +44 (0) 1877 332 717
Email: martas@highland-marketing.com