PSC Support is committed to a world without PSC.
Our mission is to improve the lives of people affected by PSC through research, information & support, and better patient care.
Our new 5-year plan focuses on improving these three key areas.
Research
Information and Support
Improving Patient Care
Our goal is to improve understanding of the biology behind PSC and turn new discoveries into tools and treatments that can quickly diagnose PSC, identify those most at risk, and manage symptoms and complications. We work closely with patients and experts in science and industry to support and fund new research.
With our Mission 2030 campaign, we're working with research partners around the world who share our vision for the PSC community. We're determined to gather more evidence on PSC and explore every option.
We're improving our research efforts to ensure transparency, thoroughness, and effective global collaboration.
We believe our research will make a real difference and improve outcomes for everyone affected by PSC.
We understand that knowledge is power for many people living with a disease. That's why providing information and support is central to what we do.
We offer timely, accurate information, evidence-based educational resources, and support services created with input from people with PSC. Their insights help us deliver relevant materials to various groups, including patients, families, employers, and medical professionals.
By raising awareness of PSC-related diseases like IBD and partnering with other patient organisations, we aim to help more people through their PSC diagnosis and treatment.
PSC is a rare, complex, and unpredictable disease. People with PSC need to feel confident in their care no matter where they live. They also need hope for the future and the chance to reach their full potential at work, in school, and in other parts of life.
We aim to support everyone in the PSC community and give a voice to those who feel unheard or have unmet needs, whether those needs are medical, emotional, or social.
As an organisation, we use our experience and knowledge of PSC to help develop new technologies and medicines. We work to ensure these advances are reviewed quickly by regulators so that people with PSC can benefit from them as soon as possible.
Accelerate PSC research through powerful partnerships
1a. Invest in top-quality research from the best teams.
1b. Build strong partnerships with industry, universities, other funders, regulators, and other patient organisations, while encouraging new ideas.
1c. Elevate the voices of people with PSC to guide and shape research.
1d. Support participation in clinical trials and studies.
Engage and inform a wider PSC community with quality information
2a. Continue being a trusted source of clear, up-to-date PSC education and trial information for doctors and patients.
2b. Make information easier for patients to access.
2c. Increase PSC knowledge among healthcare providers, especially those working with related conditions.
2d. Use new technology early to connect better with new and existing audiences.
Improve outcomes for people living with PSC
3a. Expand our reach and engagement of the PSC patient community.
3b. Advocate for the needs and priorities of PSC patients in clinical guidelines.
3c. Build stronger partnerships with regulators and policymakers to speed up approval, access, and coverage for new tests and treatments.
3d. Work with our partners to influence government and medical bodies to raise awareness of PSC and address the unmet need.
Driven by our values
Transparency
We are transparent and accountable to all our stakeholders
Together We're Better
We work collaboratively to deliver the best outcomes for PSC patients
Patient Voice
Patient involvement and contribution enables patients voices to be heard in all aspects of our work
Tenacity
We will never give up hope.
We will never give up our search for a cure.