A rare disease voice

Strengthening our voice through collaboration in the rare disease community

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PSC is a rare disease. PSC Support is active in the rare disease community nationally and internationally to strengthen our voice and improve services, treatment and support for people with PSC.

PSC Support is a member of Rare Disease UK

Rare Disease UK (RDUK) is the national campaign for people with rare diseases and all who support them.

RDUK provides a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases.

RDUK is working with health departments across the UK to implement the UK Strategy for Rare Diseases to ensure that patients and families living with rare conditions have equitable access to high quality services, treatment and support.

PSC Support is a member of EURORDIS

EURORDIS is a non-governmental patient-driven alliance of patient organisations active in the field of rare disease. EURORDIS' mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.

Bringing together all patient associations will provide people with rare diseases with a strong and unique voice. With 688 direct member organisations, EURORDIS is recognised and listened to as the European organisation specialised in the needs of patients with rare diseases.

PSC Support is a member of the Rare Liver European Reference Network

ERN RARE-LIVER

ERN RARE-LIVER is a Europe-wide network for centres of excellence in the clinical management of rare liver disease in adults and children. Currently the diseases covered by the network include: autoimmune liver disease, structural liver disease and Metabolic/Biliary atresia and related diseases. The network aims to improve the standards of care and clinical knowledge in rare liver diseases across Europe.

Working closely with the clinical centres, doctors and patients the network will: disseminate best clinical practice, use innovative IT solutions to enable clinicians to access expert knowledge across Europe, update clinical guidelines to enable standardisation of care and to provide patients with relevant high quality information.

Active at the highest levels

Martine Walmsley is an active member of the ERN RARE-LIVER and a member of the ERN RARE-LIVER Management Board and Patient Board.

Martine Walmsley is also a member of the EASL Policy and Public Health Committee as a patient and rare disease representative.

Our Rare Disease News

Medicine Development Training

16 Jun 2019

This week, Maxine, PSC Support’s Programme Development Officer, has been extending her knowledge in this area with EURORDIS, the European patient organisation for rare diseases.

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Rare Disease Day 2019

28 Feb 2019

Raising awareness online and on radio.

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UK Strategy for Rare Diseases

27 Feb 2019

PSC Support calls for a review of the UK Strategy for Rare Diseases.

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Rare liver diseases across Europe

31 Jan 2019

PSC Support attended the ERN annual meeting to represent patients on behalf of the EASL Policy and Public Health Committee

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