ELF Patient Organisation Network

MATIO Polish Cystic Fibrosis Foundation have been striving to improve the quality of life of their patients since 1996. The foundation was created that patients and their families do not feel lonely in the fight against illness. Loneliness in illness is the worst thing - especially which doesn't promise recovery.
We prepare a social campaign "Nationwide Cystic Fibrosis Week", we organize workshops for parents, training for doctors, teachers, medical students. We subsidize the purchase of medicines, individual rehabilitation stays and run a free rental of rehabilitation equipment "Deep breath". MATIO Foundation organizes social help, tailored to the current needs of those under their care.

Covers:

• Cystic fibrosis

Mesothelioma UK is a national specialist resource centre, specifically for the asbestos-related cancer, mesothelioma. The charity is dedicated to providing specialist mesothelioma information, support and education, and to improving care and treatment for all UK mesothelioma patients and their carers. The charity integrates into NHS front line services to ensure specialist mesothelioma nursing is available at the point of need. This is achieved through a growing network of specialist mesothelioma nurses, regionally based in NHS hospitals funded by Mesothelioma UK.

Covers:

• Lung cancer
• Mesothelioma

The association M.N.T. Mon Poumon Mon Air welcomes, supports and speaks out for people with the rare pulmonary non-tuberculous mycobacterial infection (NTM).

Covers:

• Non-tuberculosis mycobacteria

Belgian Association for the Fight Against Cystic Fibrosis

Covers:

• Cystic fibrosis

Moje Plíce is dedicated to:

• improving the lives of lung cancer patients in the Czech Republic through support, advocacy, and education
• increasing public awareness about lung cancer, its risk factors, and early detection methods to promote timely diagnosis and reduce stigma,
• providing emotional, financial, and logistical support to lung cancer patients and their families, ensuring they have access to necessary resources during their journey, and
• creating a supportive community of patients and caregivers, facilitating information sharing, peer support, and a sense of belonging.

Covers:

• Lung cancer

National organization Allergy and me, Serbia

Covers:

• Allergies

We aim to promote the uniting of all carriers of Alpha-1 antitrypsin deficiency and those who intend to contribute to the fight against this disease. We can protect those with the condition by facilitating access to services and information on the progress of research and to guarantee their rights as patients as well as inform and raise public awareness about the disease. We also aim to promote the dissemination of information to doctors, health professionals, public and private bodies also through the organisation of Congresses, Study Days.

Covers:

• Alpha-1 antitrypsin deficiency

The National Aspergillosis Centre Patients Support group Is funded by the NHS to improve awareness, give support & advice, provide a community for aspergillosis patients and support research.

Covers:

• Aspergillosis
• Asthma
• Bronchiectasis
• COPD
• Sarcoidosis
• Upper airways diseases

The National Asthma Council Australia (NAC) is a national not-for-profit advisory body for health professionals dedicated to the treatment of asthma and related conditions.

Covers:

• Adult asthma
• Allergies
• Asthma
• Childhood asthma

Our mission is to save and improve lives through research, education, early detection, and improved treatments for people with pulmonary nontuberculous mycobacterial (NTM) disease. By supporting innovative research, working with patients and support groups, engaging our constituencies to increase awareness of the disease, providing education opportunities for patients and healthcare providers, and demonstrating leadership at all levels to meet our goals, we strive to accelerate the development of new treatments that will help patients, and build a stronger network of doctors who are well-versed in treating this disease.

Covers:

• Non-tuberculosis mycobacteria

Open Academy & Patient-Library non profit GmbH

The OAKAD and patient library would like to support the establishment and maintenance of patient self-help groups and contribute to the transfer of skills and knowledge.

www.Patienten-Bibliothek.de

www.Patienten-Bibliothek.org

Covers:

• Acute lower respiratory infections
• Acute respiratory distress syndrome
• Adult asthma
• Allergies
• Alpha-1 antitrypsin deficiency
• Asthma
• Bronchiectasis
• ChILD
• Childhood asthma
• COPD
• Cough
• COVID-19
• Cystic fibrosis
• Idiopathic pulmonary fibrosis
• Interstitial lung disease
• LAM
• Lung cancer
• Lung disease in children
• Lung surgery
• Lung transplantation
• Mesothelioma
• Non-tuberculosis mycobacteria
• Occupational lung disease
• Other lung diseases
• Pneumonia
• Pneumothorax
• Primary Ciliary Dyskinesia (PCD)
• Pulmonary arterial hypertension
• Pulmonary embolism
• Pulmonary Fibrosis
• Pulmonary Hypertension
• Pulmonary vascular disease
• Rare and orphan lung disease
• Sarcoidosis
• Sleep apnoea
• Sleep disordered breathing
• Smoking cessation
• Tuberculosis
• Upper airways diseases

Austrian Lung Union (ÖLU)

Covers:

• Acute lower respiratory infections
• Acute respiratory distress syndrome
• Adult asthma
• Allergies
• Alpha-1 antitrypsin deficiency
• Asthma
• Bronchiectasis
• ChILD
• Childhood asthma
• COPD
• Cough
• COVID-19
• Cystic fibrosis
• Idiopathic pulmonary fibrosis
• Interstitial lung disease
• LAM
• Lung cancer
• Lung disease in children
• Lung surgery
• Lung transplantation
• Mesothelioma
• Non-tuberculosis mycobacteria
• Occupational lung disease
• Other lung diseases
• Pneumonia
• Pneumothorax
• Primary Ciliary Dyskinesia (PCD)
• Pulmonary arterial hypertension
• Pulmonary embolism
• Pulmonary Fibrosis
• Pulmonary Hypertension
• Pulmonary vascular disease
• Rare and orphan lung disease
• Sarcoidosis
• Sleep apnoea
• Sleep disordered breathing
• Smoking cessation
• Tuberculosis
• Upper airways diseases

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

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)

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