Celebrating Rare Disease Day with patientprimary

We were proud to be part of Rare Disease Day just last week with events organised all around the world to raise money and awareness for the millions of people living with rare diseases.

Around 350 million people across the globe are living with a rare disease – defined as a disease that affects fewer than 200-250k people – and there are thought to be between 6-7k different rare diseases. With organised collaborations and initiatives to celebrate Rare Disease Day, the message is simple – maybe rare isn’t so rare after all.

Living with a rare disease can be isolating, and it is often difficult for patients to find ‘somebody like me’. As well as raising essential funds and awareness to improve the lives of patients living with rare diseases, Rare Disease Day brings patients together in a collaborative way – helping them to feel like they are part of something bigger, not defined by their illness.

Painting our faces for Rare Disease Day to show our support!

The patientprimary team embraced the opportunity to celebrate Rare Disease Day by painting our faces, raising awareness and showing support for this important cause. Our team also attended some local events here in the UK, Jean Hood from the patientprimary team shared her experience of ‘Taking patient involvement to the next level’ at Royal Holloway, University of London:

‘Royal Holloway celebrated its eighth annual Rare Disease Day on Monday, 26th February 2018.  The theme was Research: taking patient involvement to the next level, conveying the message that, whilst patients are subjects, they can be proactive actors in research.

The objective of the day was to raise awareness of rare diseases and the millions of people who are affected by them, highlighting the need for more research and funding to help sufferers and their families. The event included a range of talks, hands-on activities and a small exhibition area, managed by volunteer actively involved in supporting a specific disease and rare disease sufferers.

The speakers and presentations were interesting and inspiring, and concluded with Christo Kapourani who suffers from Epidermolysis Bullosa (EB), an extremely debilitating skin disease; Christo gave us just a small insight of his life and how the disease has affected him, having been diagnosed two days after birth. Despite his chronic disability and having lived with skin cancer since 2015, Christo has a very positive approach to life.  He is now studying for a Masters degree and his message was both poignant and immensely encouraging.

Following some thought-provoking workshop sessions, patientprimary had the opportunity to speak with Iain Clarke, Head of Communications and Fundraising at Action Duchenne, about their involvement in a current Duchenne Muscular Dystrophy (DMD) project.

With thanks to Royal Holloway for such an inspiring and inclusive event, we look forward to joining you again next year.’

One of the key messages around Rare Disease Day is the need to take into consideration the individual needs of patients, and to involve patients in their treatment and any research into their particular condition. We are seeing a growth in impact from the patient’s prospective in clinical protocol design. The shift is from scientifically and medically robust clinical trials to those where the patients’ voice is listened to and their individual needs are considered. This ties in very closely with patientprimary’s approach to supporting patients through clinical trials, and with our aim to help reduce the stress and impact of taking part in a clinical trial on patients living with rare diseases. Our objective is to listen to patients’ individual needs, making sure that their clinical trial journey is tailored to their requirements. This involves taking individual patient circumstances into account and adapting accessibility and support to accommodate these.

The challenges faced by people living with rare diseases are sometimes as unique as the condition itself. Factors such as location, accessibility, and the age and maturity of patients (rare diseases often affect paediatric patients) all need to be considered.

By taking an active interest in the unique challenges facing patients, the patientprimary team are able to optimise the support that patients receive during their participation in trials, reducing the likelihood that they will drop out. Through our patientprimary app, we give patients control over their clinical trial experience, allowing them to book accommodation and travel options to suit their specific needs at the touch of a button.

At patientprimary we care about patients and their welfare and needs. We are always eager to listen to patients and to support initiatives such as Rare Disease Day. Giving patients a voice and encouraging them to speak up about what makes a difference to them means that we can tailor our services to reduce the stress and impact of taking part in clinical trials for people living with rare diseases.

The patientprimary team attend events and conferences specifically to meet and listen to patients living with rare diseases, as well as visiting individual patients in hospital to talk with them about their unique experiences. During the last year we have been able to listen to patients and their families directly, understanding their challenges and understanding what can be done to improve their journeys to hospital and their clinical trial experiences. Among other initiatives we attended last year have been:-

We believe in giving patients a voice, and encouraging them to talk to us about the challenges they are facing. We will always listen.