International collaboration to advance policy into rare diseases

A University of Plymouth academic is working with a European partner to take the next step in improving lives for people with rare diseases.

Dr Konstantin Glebov, Lecturer in Clinical Neurobiology, has established links with a Dutch organisation – the CMTC-OVM association – committed to promoting the welfare of people who experience rare vascular malformations.

The move comes after Dr Glebov established the South West Rare Diseases Policy Network last year. In addition to improving support within the South West of England for people with rare diseases (ie conditions affecting fewer than 1 in 2,000 people), the new link hopes to progress patient advocacy and improve access to information at local, national and international levels.    
Dr Glebov is also forging links with pharmaceutical companies focused on rare diseases to gauge a private sector perspective on what needs to be done to improve policies for research and availability of therapeutic options. 
Ultimately, he will be evaluating policy practices for rare diseases in Europe and the UK.
The CMTC-OVM (Cutis Marmorata Telangiectatica Congenita and Other Vascular Malformations) association was set up in 1997 by Lex van der Heijden, whose daughter was born ‘black and blue’. Midwives and a paediatricians has never seen such physical markings before, and at six months, Lex’s daughter was eventually diagnosed with CMTC – a birthmark that affects the blood vessels in the skin causing a net-like pattern on the skin giving a ‘marbled’ appearance.
The CMTC-OVM association brings patients, families and healthcare providers together, promoting information provision and patient advocacy. With an international network and a ‘seat at the table’ in national policy making, the link with Dr Glebov and his work is hoped to improve access to information and care for people with rare diseases. 

Dr Glebov said: 
“Rare diseases are just that – very rare, affecting less than one person in every 2,000. So it can be hard for patients to access information and support that could help their condition. In the South West and beyond, we need to create and expand networks in order to learn with and from each other – and the CMTC-OVM is a great example of providing patient support, and ensuring other people sit up and listen too. Working with and on behalf of people with a variety of different conditions, I’m so keen to shine a spotlight on rare diseases and ensure that people can access the help they need at all levels.”

<p>Dr Konstantin Glebov</p>

Lex van der Heijden, founder and President of CMTC-OVM association, added: 

“We are really pleased to be working with the University of Plymouth to improve policy and support for people with rare diseases. 

“The CMTC-OVM organisation is currently training patient advocates from all over the world, creating regular informative material (such as videos), is a member of the Chief Experience Officers Council (part of the Dutch Ministry of Health, Welfare and Sport), and active in many other international organisations such as the European Reference Networks.

“We are proud of our impact over the last 25 years, and look forward to working with Dr Glebov to evaluate policy practices for rare diseases in Europe and the UK to see how we can positively impact on more people.”


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