That's how we start these things, right?
Welcome to an alternative patient organisation for people in the UK impacted by psoriatic disease!
Have you ever felt underrepresented as someone living with psoriatic disease?
Do you feel excluded because you have psoriasis or psoriatic arthritis or are a caregiver?
Do you get frustrated by a lack of creativity or engagement to 'meet patients where they are?'
Have you been searching for a community for those living with psoriatic disease?
Have you ever asked why the UK isn't better represented on the global advocacy stage or where your voice is beyond borders?
Do you worry about the increasing trend of patient organisations being medical professional-led rather than patient-led?
Do you think more should be done to raise awareness 'beyond the skin' - for example, the wider burden of psoriatic disease on your family or mental health?
Well, we do, too! That's why a group of young and motivated advocates, community builders, and changemakers who were already doing great things in their community came together to offer an alternative approach to patient organisation and community advocacy.
Our board comprises of caregivers, parents, and people living with psoriasis, psoriatic arthritis, chronic pain and other inflammatory conditions, who all want to be the change they want to see. Between us, we've started vast online communities, podcasts, and live talk shows about living with chronic illness, run in-person chronic pain groups, arranged community events and social meetups, moderated peer support communities, sat on advisory boards and panels as lived experience experts and spoken about our conditions around the world. So, in many ways, this isn't the start at all.
Always patient-led, person-centred, and collaborative, we won't waste valuable resources reinventing the wheel and creating silos and instead strive to be the place and voice for people living with psoriatic disease in the UK and beyond.
Our charitable goals and promise to you:
To advance education and raise awareness in the general population of the impact of psoriatic disease.
To promote the value of lived experience, co-production and advocate for including the patient's voice in every aspect of healthcare provision.
To provide support, guidance and resources to patients and caregivers and promote the vital role both play in managing psoriatic disease.
To relieve people impacted by the physical and mental burden of living with psoriatic disease and associated comorbidities by providing peer support and community networks for the public benefit.
There's a hive of activity here at HQ, so check back regularly as we share specifics of our initial advocacy projects, how you can get involved, introductions from our leadership team and the services we will provide, with your help, for everyone impacted by psoriatic disease.
Joel Nelson Founder and Chair
Comments