Oxford PharmaGenesis has recently become a mentor to a newly established patient group that aims to improve the lives of people affected by certain rare genetic disorders. PTEN UK & Ireland supports patients, parents and carers who are affected by alterations in the PTEN gene, including PTEN hamartoma tumour syndrome (PHTS), Cowden syndrome or Bannayan–Riley–Ruvalcaba syndrome. Oxford PharmaGenesis will help the group to build their brand and grow their network of patients and professionals.
The relationship between PTEN UK & Ireland and Oxford PharmaGenesis has been made possible by the Peer Mentoring Programme established by Findacure, an organization that envisions a world in which disease communities collaborate with the medical community to develop new treatments and cures. Earlier this month, this new relationship kicked off with Lizzie Perdeaux, Senior Medical Writer with a special interest in genetic disorders, and Ellie Collins, Marketing Coordinator and a social media expert, both from Oxford PharmaGenesis, attending the 2nd PTEN Patient Day at Heron Tower, Bishopsgate in London, UK.
Ellie, and her father, have a PTEN gene mutation. At the meeting, Ellie presented her own patient story about life with Cowden syndrome. Her story was very well received by the audience, as they heard first-hand how people can live with a PTEN mutation with minimal negative impact on their day-to-day lives. Lizzie offered the audience some insights from her experience of writing for patients, researchers and clinicians at the Birt–Hogg–Dubé Syndrome (BHD) Foundation, a medical research and patient support charity. Ellie and Lizzie also highlighted the considerable expertise and advice that Oxford PharmaGenesis can offer patient organizations and companies seeking to engage with patients.
The rest of the day was packed full of expert insights. Katherine Lachlan, Consultant Clinical Geneticist at the University Hospital of Southampton, provided an excellent and accessible overview of the signs and symptoms of PTEN hamartoma tumour syndrome (PTHS). Maria Whitehead, Director of the newly formed PTEN Research Foundation, gave an interesting and clear presentation on the science underlying PTHS and research into potential therapies that the Foundation is interested in funding. The day finished with a very successful ‘speed dating’ session that enabled patients, researchers, medical writers and marketing coordinators to mingle and make new contacts.
There was an incredible energy at the meeting, emanating from the feeling that a real community was starting to develop. The power that patients have when they get together and take control of their condition and treatment should not be underestimated. It was a truly inspiring day, and particular thanks are due to Ian Stock and his team for arranging such a polished, informative and enjoyable event.[vc_row][vc_column][vc_images_carousel images=”5411,5410″ img_size=”medium” onclick=”link_no” autoplay=”yes” wrap=”yes”][/vc_column][/vc_row]
