Advocate on behalf of PNH patients to overcome practical, lifestyle challenges – helping them to live their lives to its full potential
Utilise our knowledge of PNH patients’ experiences to shape and inform PNH care, treatment and research
Objectives – how we will go about achieving this
Increase resilience of PNH patients
Ensure sustainable access to PNH-specialised psychological / emotional wellbeing for PNH patients at any point in their journey
Increase the quantity and variety of information available for PNH patients and their supporter
Further segment/stratify peer support so that PNH patients can speak to people with similar experiences – in particular, creating support for younger people
Advocate on behalf of PNH patients to overcome practical, lifestyle challenges – helping them to live their lives to its full potential
Develop a clear understanding of the biggest barriers and unmet needs for PNH patients, and prioritise areas of focus for advocacy
Develop and deliver campaigns to address unmet needs, and overcome these barriers and challenges
Utilise our knowledge of PNH patients’ experiences to shape and inform PNH care, treatment and research
Gather real world data on, and increase awareness of, the wide-ranging experience of living with PNH
Campaign for more, and increase patient involvement in, research into areas identified as priorities
Campaign to improve care in areas identified by patients and other experts
Engage and inform licensing and regulatory processes, e.g. NICE, MHRA
Enablers – what we know we need as an organisation in order to achieve our goals
Listen to and involve people living with PNH to shape everything we do
Recruit, support and retain excellent people as staff and volunteers