Pharmafile Logo

OPEN Health Graduates and the XP Support Group

April 1, 2019 |  

During our graduate induction period in September 2018, we were asked to find a charity that could benefit from the expertise of the OPEN Health practices. We made the decision to work with the XP Support Group (XPSG), which is a charity based in High Wycombe that works with individuals affected by Xeroderma pigmentosum (XP).

XP is a rare skin condition where individuals have an impaired ability to repair DNA damage caused by UV light, often resulting in dry skin, pigmentation and increased susceptibility to skin cancer. As a result, individuals have to avoid sunlight by wearing protective clothing and sun cream. The XPSG works with individuals with XP to provide tips for staying safe in the sun and how to avoid harmful UV rays, even whilst indoors.

- PMLiVE

Some of our OPEN Health graduates with Sandra, the founder of the XP Support Group, at Owl Patrol 2019

Pink divider

We initially sent out multiple questionnaires to individuals with XP aged 16–35 years to help understand what motivated them to get involved in an XP support group. This information will be useful for the XPSG moving forward, as it will allow them to tailor activities in order to meet the needs of a wider range of affected individuals. To compliment these insights, we also devised a helpful ‘social media handbook’ to help the charity engage with potential new members and reconnect with their existing supporters.

Some of us also went along to the annual XPSG ‘Owl Patrol’ – a camp for individuals with XP where they can meet other affected individuals and take part in various organised activities. This year’s theme was Harry Potter and included a trip to the Harry Potter Studios! This was a fun opportunity to get involved with the XPSG and it was a great insight into the support the charity provides.

We have also been working on developing an animation and an infographic to be shown in clinic waiting rooms, with the aim of encouraging more individuals with XP to get involved with the XPSG. In addition to this, we have been working alongside the charity to develop new branding to freshen up their current materials, such as the monthly newsletter.

At the Marlow Christmas Market, we managed to raise £500 by selling goods such as delicious homemade cakes and the XPSG Christmas cards. We have more fundraisers planned to support this fantastic charity throughout 2019.

If you want to learn more about XPSG and what they do, you can visit their website at: http://xpsupportgroup.org.uk/

Pink divider

Get in touch

If you have any queries or would like more information on anything mentioned in this article, please contact Margot Hannah (OPEN Health CSR Lead) at: MargotHannah@OpenHealthGroup.com

- PMLiVE

Photo taken of families and volunteers at this year’s Owl Patrol

This content was provided by OPEN Health

Company Details

 Latest Content from  OPEN Health 

Digital Therapeutics Landscape in Europe

OPEN Health introduce an overview of regulatory and HTA developments for digital therapeutics in Europe focusing on Germany and the UK

OPEN Health’s virtual reflections on the World Orphan Drug Congress US

Another congress attended in this virtual world with learnings gathered and connections made across the rare disease community. It was great to be joined by many colleagues from all our...

A day in the life of the Global Head of Publications

We asked Mina Patel to give us an insight into her role as Global Head of Publications at OPEN Health

Striving to become more patient-centric?

Explore more with OPEN Health

Meet OPEN Health and Pharmerit Experts at the World Orphan Drug Virtual USA Congress

Join OPEN Health and Pharmerit – an OPEN Health Company at the World Orphan Drug Virtual Congress from August 24-27, 2020, as we present:Advanced Therapies Commercial: Tuesday, August 25Succeeding with Star Wars...

OPEN Health at the World Orphan Drug Conference USA

Our Director of Rare Disease, Gavin Jones looks forward to his conversation with Emily Crossle & Betsy Bogard at #WODCUSA2020 !

OPEN Health Medical Communications is awarded Medical Affairs Agency of The Year at the Communiqué Awards 2020

We are delighted to announce that OPEN Health Medical Communications was named Medical Affairs Agency of the Year at the virtual 2020 Communiqué Awards ceremony on 02 July 2020.

Candice Subero to Lead Global Marketing for OPEN Health

OPEN Health is pleased to announce that Candice Subero has been named Global Marketing Lead, effective June 4, 2020. Candice will oversee strategic communications and marketing efforts across all OPEN...

The RARE Youth Revolution has begun

OPEN Health are proud to support RARE Revolution Magazine who have launched a dedicated RARE youth online platform powering up the voices of the youth rare disease community.