ELF Patient Organisation Network

Patient organisation Pulmonary Emphysema – COPD Germany

Covers:

• COPD

Lung Transplant Patient Association, Belgium

Covers:

• Lung transplantation

PRT organises lectures, campaigns and courses on various topics in the field of health. PRT is also a contact point for all citizens who have questions about health issues, living wills and patients' rights. We have made it our business to answer your questions about "patients' rights" and "patient wills" as best we can.

Covers:

• Sarcoidosis

PCD Support – Primer Silyer Diskinezi Derneği (SiLYADER) is the primary patient organisation for primary ciliary dyskinesia (PCD) in Turkey.

Covers:

• Primary Ciliary Dyskinesia (PCD)

We are PCD Support UK. We're here for those affected by PCD, we talk about PCD as widely as possible and we champion research to improve its diagnosis, management.

Primary Ciliary Dyskinesia (PCD) is a rare, genetic disease affecting around 1 in 15,000 people in the UK. It is caused by abnormal motile cilia (motile cilia are the microscopic hairs that beat in the airways, sweeping secretions out of the respiratory tract). PCD can affect the lungs, nose, sinuses, ears and fertility.

Covers:

• Primary Ciliary Dyskinesia (PCD)

PCD Sverige/Sweden is a nationwide, volunteer-run association that supports people affected by primary ciliary dyskinesia (PCD) in Sweden. Our objective is to enhance quality of life for individuals and families affected by PCD through:

• Promoting awareness and understanding of PCD, as well as the associated functional impairments;
• Advocating with decision-makers to ensure that those impacted by PCD receive adequate care, support, and service;
• Establishing collaborations with key institutions and organizations relevant to PCD, nationally and internationally;
• Fostering a sense of community among members and facilitating opportunities for mutual support.

Covers:

• Acute respiratory distress syndrome
• Bronchiectasis
• Lung surgery
• Lung transplantation
• Primary Ciliary Dyskinesia (PCD)
• Upper airways diseases

PF Warriors is a global, patient-led organisation serving more than 30,000 patients, caregivers, and families across the United States and 14 additional countries affected by pulmonary fibrosis (PF) and other fibrotic interstitial lung diseases (ILDs). Our mission is to empower the global PF community through trusted education, peer support, advocacy, multilingual resources, and meaningful engagement in research, healthcare, and public policy. We help individuals better understand their disease, treatment options, clinical research opportunities, and supportive care, enabling them to participate more confidently in their healthcare journey.

Covers:

• Pulmonary Fibrosis

PinkTree Foundation is India member organization of GAAPP. PinkTree Foundation is on a mission to assist patients suffering from any respiratory ailment. The Foundation will work with project partners at the grassroot level to improve lung health by enhancing awareness amongst patients, and driving change required to prevent the increasing prevalence of respiratory diseases in India.

The purpose of the Federation is to represent the interests of people suffering from asthma, allergic diseases and chronic obstructive pulmonary diseases, defending their rights and freedoms, coordinating activities in this area and creating conditions for the full and active participation of people suffering from asthma, allergic diseases and COPD in social life.

Covers:

• Acute lower respiratory infections
• Adult asthma
• Allergies
• Alpha-1 antitrypsin deficiency
• Asthma
• COPD
• COVID-19
• Cystic fibrosis
• Lung cancer
• Occupational lung disease
• Pneumonia
• Pulmonary arterial hypertension
• Pulmonary Fibrosis
• Pulmonary Hypertension
• Sarcoidosis
• Sleep apnoea
• Sleep disordered breathing
• Smoking cessation
• Tuberculosis
• Upper airways diseases

PCD Australia Foundation is a registered charity established in 2013 and run by a volunteer committee with support from respiratory specialists across Australia. The organisation works to increase awareness of Primary Ciliary Dyskinesia (PCD) among healthcare professionals and the wider community, helping to improve understanding and recognition of this rare condition.
The Foundation aims to support people living with PCD by promoting access to high‑quality care and improving quality of life for patients and families. It provides information, support services and community activities, advocates for the needs of those affected, raises funds to advance its work, and encourages research to improve diagnosis, treatment and long‑term management of PCD.

Covers:

• Primary Ciliary Dyskinesia (PCD)

PROLONG VZW is an initiative by and for people with lung cancer or lung adenocarcinoma (mesothelioma) and their loved ones, who want to support each other and encourage contact between fellow sufferers by organising various activities. We are active all over Flanders (Belgium).

Covers:

• Lung cancer

Pulmonary Hypertension Society of Latvia

Covers:

• Pulmonary Hypertension

Pulmonary Hypertension vzw

Covers:

• Pulmonary Hypertension

Pulmonary Fibrosis Northern Ireland was set up by Respiratory Consultant Eoin Murtagh Specialist Respiratory Nurse Pat Gorman in 1995. They provide support, guidance, advice, and signposting to sufferers of pulmonary fibrosis and their families from across Northern Ireland. They are working to provide a bespoke respite facility for sufferers and their families.

The PFNI was set up by respiratory consultant Eoin Murtagh and specialist respiratory nurse Pat Gorman in 1995. We provide support, guidance, advice and signposting to sufferers of pulmonary fibrosis and their families from all over Northern Ireland. We have recently become a charity and are working to provide a bespoke respite facility for sufferers and their families. We work with all five health trusts here and also form part of the all party working group on lung health for our nation.

Covers:

• Idiopathic pulmonary fibrosis
• Interstitial lung disease

Our aim is to offer support and comfort for those affected by pulmonary fibrosis.

Covers:

• Pulmonary Fibrosis

From its launch in the year 2000, the PHA UK has now grown to almost 4,500 members. Our community is like no other; a unique group of people committed to supporting each other and raising awareness of this serious condition in the hope of one day, finding a cure.

Covers:

• Pulmonary Hypertension

We are a dedicated organization dedicated to patient support, research and awareness of pulmonary hypertension.

Covers:

• Lung transplantation
• Pulmonary Hypertension