Action for Pulmonary Fibrosis

Who They Are & What They Do

Action for Pulmonary Fibrosis (APF) is a UK charity dedicated to improving the lives of those affected by pulmonary fibrosis (PF). Their mission is to unite people to foster change, ensuring those with PF and their families receive the care and support they need. They offer expert advice, information, and education, support a growing network of groups, and raise PF awareness. Additionally, they fund research to advance PF treatment. With 15,000 to 20,000 new cases annually, early diagnosis and treatment are crucial. Together, they strive to end the suffering caused by pulmonary fibrosis.

American Thoracic Society

Who They Are & What They Do

Founded in 1905, the American Thoracic Society (ATS) is the world’s leading medical society committed to advancing global respiratory health through collaboration, education, and advocacy. With over 16,000 members, ATS focuses on scientific discoveries, professional development, global health, and patient care transformation. Key activities include developing clinical practice guidelines, hosting the annual International Conference, publishing four peer-reviewed journals, advocating for better respiratory health worldwide, and providing extensive patient education and career development resources.

Association for Respiratory Technology and Physiology

Who They Are & What They Do

The Association for Respiratory Technology & Physiology (ARTP) is the UK’s leading authority on physiological measurement in respiratory medicine. Comprised of healthcare scientists, ARTP produces national guidelines and standards, collaborates with the Department of Health on policy, and engages with global organisations like the European Respiratory Society.

ARTP emphasises Continuing Professional Development, offering national qualifications in Respiratory Function Testing and Spirometry, hosting educational events, and organising an annual conference. They also publish guidelines, circulate job vacancies, fund professional development grants, and work closely with industry and health authorities to shape respiratory healthcare policy.

Association of Respiratory Nurse Specialists

Who They Are & What They Do

Founded in 1997, the Association of Respiratory Nurse Specialists (ARNS) champions the respiratory nursing community, promotes excellence in practice, and influences respiratory health policy. ARNS collaborates with organisations like the Department of Health and NICE to shape respiratory policy and practice.

ARNS supports evidence-based practice through bespoke courses, study days, and an annual conference. It fosters networking and information sharing via its website, email updates, and Facebook page. ARNS also offers bursaries for research and encourages new initiatives in respiratory care.

ARNS works closely with the Nursing Times, contributing articles, suggesting topics, and providing peer reviews for respiratory publications.

Asthma + Lung UK

Who They Are & What They Do

Air pollution in many parts of the UK exceeds WHO limits, leading to 36,000 early deaths annually. One in five people will develop a lung condition, and 5.4 million live with asthma.

Respiratory care in the UK is inadequate. Even before COVID-19, lung disease hospital admissions were rising rapidly. Lung disease is the third leading cause of death, costing the NHS over £9 billion annually. Early diagnosis and proper care are often lacking. Asthma + Lung UK listens to those affected to shape their work.

Asthma + Lung UK envisions a world where everyone has healthy lungs through better research, treatment, and support. Their five-year plan aims to transform lung health perceptions and drive real progress.

British Thoracic Society

Who They Are & What They Do

The mission of the British Thoracic Society is to enhance the respiratory workforce and develop services that promote sustainable solutions and reduce health inequalities. They focus on educating professionals to advance knowledge in the prevention, diagnosis, and treatment of lung disease and supporting the respiratory team to improve care standards.

As a well-governed, democratic society, they are responsive to member feedback and aim to reflect membership diversity in their committees and activities. Public, patients, and carers are involved in planning and reviewing their work.

As a registered charity and company limited by guarantee, they operate across the UK, collaborating globally to improve respiratory care and address inequalities.

Canadian Pulmonary Fibrosis Foundation

Who They Are & What They Do

Pulmonary fibrosis, affecting about 30,000 Canadians, has no cure and a challenging prognosis. Diagnosis can take over a year, and most individuals live only three to five years post-diagnosis. Research offers the best hope for better treatments and a cure.

The Canadian Pulmonary Fibrosis Foundation (CPFF) is a registered charity dedicated to supporting those affected by pulmonary fibrosis (PF). CPFF collaborates with patients, caregivers, medical experts, and governments, leveraging the support of volunteers, staff, and donors to fulfill its mission.

CPFF supports patients and caregivers, educates the public, raises funds for research, and advocates for those with PF. Their vision is a world free of pulmonary fibrosis, and their mission is to enhance lives through support, advocacy, awareness, research funding, and hope.

Chartered Society of Physiotherapy

Who They Are & What They Do

The Chartered Society of Physiotherapy (CSP) is the professional, educational and trade union body for the UK’s 65,000 chartered physiotherapists, physiotherapy students and support workers. The CSP’s goals are to create a culture which is characterised by innovation, respect, encouragement, passion and teamwork.

Education for Health

Who They Are & What They Do

Education For Health are a dynamic healthcare charity committed to providing exceptional education, training, and support to healthcare professionals. Their Interactive Blended Online Learning (IBOL) model offers flexible, multidimensional courses that accommodate busy schedules, allowing learners to study at their own pace and style.

The IBOL model includes regular opportunities for interaction with facilitators and tutors to ensure direct support. They aim to improve health outcomes by integrating current best practices into daily activities. With over three decades of experience, they continually update and quality assure their materials based on feedback from learners and commissioners to stay relevant and effective.

European Lung Foundation

Who They Are & What They Do

The European Lung Foundation (ELF) is a patient-led organisation dedicated to improving lung health and advancing care through collaboration between patients, the public, and healthcare professionals. Founded in 2000 and partnering with the European Respiratory Society (ERS), ELF operates from Sheffield (UK) and Brussels (Belgium), with a network that includes over 350 volunteers and 200 respiratory organisations across Europe.

ELF’s mission is to enhance lung health and advance treatment through joint efforts with healthcare professionals. Their vision is to involve people with lung conditions in healthcare and research while ensuring everyone in Europe has access to reliable, multilingual information about lung health and disease.

European Pulmonary Fibrosis Federation

Who They Are & What They Do

The European Pulmonary Fibrosis Federation (EU-PFF), established in 2016 and based in Belgium, is a not-for-profit umbrella organisation representing Pulmonary Fibrosis (PF) patient groups across Europe. EU-PFF collaborates with member organisations and partners to enhance awareness of PF in politics, public health, and research, addressing regional differences and similarities.

They work closely with medical experts and researchers to highlight the disease, its diagnostics, and treatments. EU-PFF contributes to research, scientific publications, and patient education through webinars and updates. They also organise Europe’s first PF Patient Summits and conduct an annual awareness campaign each September.

European Respiratory Society

Who They Are & What They Do

The European Respiratory Society (ERS) is a leading international membership organisation uniting physicians, healthcare professionals, scientists, and experts in respiratory medicine from over 160 countries.

ERS’s mission is to advance lung health and reduce the impact of respiratory diseases. The organisation focuses on scientific research, education, and advocacy, offering high-quality resources and raising awareness of lung diseases among policymakers. ERS collaborates with the European Lung Foundation to extend its impact to the public and patients.

Lung diseases, including asthma, lung cancer, and Chronic Obstructive Pulmonary Disease (COPD)—the third leading cause of death—affect one in eight people in Europe, translating to a death every minute.

Hugh James

Who They Are & What They Do

Hugh James is a leading UK law firm dedicated to delivering justice and solving complex issues with expertise and commitment. With a focus on protecting businesses, individuals, and communities, the firm leverages its entrepreneurial spirit and values to drive impactful outcomes.

The firm provides specialist legal support for those affected by interstitial lung diseases, including hypersensitivity pneumonitis and asbestosis. These conditions, often linked to industrial exposure, may entitle patients to civil compensation and government payments. Hypersensitivity pneumonitis results from inhaling organic dusts in occupations like farming and metalwork, while asbestosis, caused by asbestos exposure, can lead to progressive lung fibrosis. Hugh James offers expert advice for navigating claims and securing the compensation necessary for affected individuals.

With offices across Cardiff, London, Manchester, Southampton, and Plymouth, Hugh James continues to champion client needs and uphold its core values of determination and integrity.

Irish Lung Fibrosis Association

Who They Are & What They Do

Founded in 2002, the Irish Lung Fibrosis Association (ILFA) is the national patient organisation for lung fibrosis in Ireland. It offers research, education, and support for individuals and families affected by this serious and life-limiting condition.

ILFA provides evidence-based information, practical resources, and advocacy to support patients and healthcare professionals. They focus on raising awareness, advancing education, and contributing to research. Their aim is to improve the quality of life for those living with lung fibrosis.

Irwin Mitchell

Who They Are & What They Do

Irwin Mitchell is a leading UK law firm with extensive expertise in pursuing claims for patients who have acquired respiratory diseases as a result of their work. Established in 1912, Irwin Mitchell represent claimants with various lung related illnesses including silicosis, hypersensitivity pneumonitis, occupational asthma, COPD, mesothelioma and other asbestos and dust related diseases.

The team at Irwin Mitchell boasts unparalleled experience across the country, with offices in 17 cities across England and Wales, including London, Birmingham, Southampton, Bristol, Leeds, Sheffield, Newcastle and Cardiff. Irwin Mitchell Scotland adds to the UK offering with an office in Glasgow.

The firm is renowned for their compassionate approach, guiding patients through complex legal issues and providing tailored advice enabling access to financial support and advice when it is needed most.

Marie Curie

Who They Are & What They Do

Marie Curie is the UK’s leading end-of-life charity, providing expert hospice care and support to individuals with terminal illnesses. They offer clinical and emotional care to ensure comfort and quality of life, whether at home or in their hospices.

Their services include practical and emotional support over the phone and online, as well as free information on dying, death, and bereavement. Marie Curie’s team of nurses, healthcare assistants, and companions deliver personalised care, allowing patients and their families to focus on what matters most. They also provide respite for caregivers and offer comprehensive support throughout the end-of-life journey.

Pulmonary Fibrosis 360

Pulmonary Fibrosis Foundation

Who They Are & What They Do

The Pulmonary Fibrosis Foundation (PFF) is a nonprofit organisation established by Albert Rose and Michael Rosenzweig, PhD, in honor of their sister Claire, who died from idiopathic pulmonary fibrosis (IPF). Both founders were later diagnosed with the disease. The PFF’s mission is to advance treatment and find a cure for pulmonary fibrosis (PF) while offering robust support and education for those affected.

As a leading patient advocacy organisation, the PFF focuses on raising awareness, driving research, and providing resources for patients, caregivers, and healthcare providers. Their core values include patient-centered care, urgency, innovation, collaboration, inclusiveness, and compassion.

Pulmonary Fibrosis Northern Ireland

Who They Are & What They Do

Pulmonary Fibrosis NI aims to provide support for patients, their families and carers to improve the quality of life of sufferers of Pulmonary Fibrosis in Northern Ireland; as well as raising awareness of PF, amongst the medical profession, decision-makers and the wider public and to support research into improved outcomes and greater understanding of PF.

Set up in 2015, Pulmonary Fibrosis NI works with Respiratory Consultants and Specialist Respiratory Nurses at all five Health and Social Care Trusts in Northern to provide support throughout Northern Ireland. They have 2 facilities available for respite/retreat purposes for sufferers of pulmonary fibrosis and their families. The first facility was purchased in 2022 and is a large modern static two-bedroom caravan in Ballycastle, Co Antrim. Ballycastle is a small seaside town on the north coast of Northern Ireland. The latest purchase is a five-bedroom detached house on the famous 5* Lough Erne Golf Resort Village and Hotel. The respites are prioritised for Northern Ireland patients but we would consider requests from the other nations.

Pulmonary Fibrosis Trust

Who They Are & What They Do

The Pulmonary Fibrosis Trust is dedicated to supporting individuals affected by pulmonary fibrosis, a debilitating and life-limiting condition. Established by patients who faced insufficient information and support, the Trust provides both practical and emotional assistance to those in need. It focuses on raising awareness about the daily challenges of living with the illness.

The Trust aims to support not only those diagnosed with pulmonary fibrosis but also their families and loved ones.

Pulmonary Hypertension Association

Who They Are & What They Do

The Pulmonary Hypertension Association (PHA) UK is the sole charity in the UK focused on supporting individuals affected by the rare disease pulmonary hypertension (PH). Established in 2000, the association has grown to over 4,500 members. It provides vital support and resources to enhance the quality of life for those with PH and their families.

The PHA UK raises awareness, promotes early diagnosis, and supports research to improve treatment and management of PH. It also advocates for patients’ needs, collaborates with NHS specialist centers, and organises educational and social events to foster community and ensure equitable access to care.

Raynaud’s & Scleromeda Association

Who They Are & What They Do

Scleroderma & Raynaud’s UK (SRUK) is the sole UK charity dedicated to enhancing the lives of those affected by scleroderma and Raynaud’s phenomenon. The charity focuses on raising awareness, providing support, funding groundbreaking research, and striving to find a cure.

SRUK aims to connect with every individual diagnosed with these conditions, offering vital information and support. By linking patients with professionals, SRUK fosters a strong, collaborative community that advances research and amplifies advocacy efforts. Central to SRUK’s mission is improving the quality of life for those affected, with the goal of enabling them to live fully until a cure is found.

Respiratory Nursing Association of Ireland

Who They Are & What They Do

ANÁIL is a body that seeks to provide peer support to respiratory nurse specialists and respiratory advanced nurse practitioners. ANÁIL aims to promote respiratory care in the wider nursing community nationally and internationally.

The purpose of ANÁIL is to provide a supportive network, promote respiratory specialty practice through education and professional development and to influence the policy of respiratory care in Ireland.

Rotherham Respiratory

Who They Are & What They Do

Rotherham Respiratory are an educational establishment with over 20 years of experience providing evidence-based education for Health Care Professionals. We believe that our expertly developed courses offer a way of learning that translate to clinical practice giving healthcare professionals the knowledge and confidence to provide excellent, person-centered care to people with long term conditions.

The Dyspnea Society

Who They Are & What They Do

The Dyspnea Society originated from a group of clinicians and scientists interested in dyspnea research and management. Initially convened in 2005 for the ‘Dyspnea’ meetings in San Diego, the group expanded significantly over the years. In 2013, an informal society was established to facilitate networking between meetings. By 2023, The Dyspnea Society was formalised, forming an executive committee and incorporating as a non-profit organisation.

The Society’s mission is to advance the research, measurement, and management of dyspnea (shortness of breath). This is achieved through an international, multidisciplinary membership dedicated to enhancing scientific knowledge and its application in clinical practice.

The Sarcoidosis Charity

Who They Are & What They Do

Founded in 1997, SarcoidosisUK (formerly SILA) has been dedicated to supporting individuals affected by sarcoidosis. The Board members, who have personal experience with the disease, are committed to improving the lives of those impacted by this rare condition.

As a charity solely reliant on personal donations, SarcoidosisUK addresses the challenges of poor information, limited support, and minimal research in the field. The organisation focuses on providing accurate information, offering emotional support through various channels, funding research aimed at finding a cure, and raising awareness to enhance understanding among medical professionals and the public.

The Scleroderma Society

Who They Are & What They Do

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