ELF Patient Organisation Network

The Croatian Association of Patients with Sarcoidosis (UOS) tries to provide support to patients and their families through its activities and through this group. Unfortunately, patients have thousands of questions after the diagnosis, and in the hospital they will not find out what sarcoidosis is, how to live with it, what to expect, what is the extent of the disease and what are the degrees of the disease. Faced with reduced life opportunities, they will ask themselves questions about their rights to protection and social assistance. We are here together to answer various questions and contribute to the understanding of the disease and the way of life with it by sharing experiences.

Covers:

• Sarcoidosis

Association of Citizens with Pulmonary Hypertension "Breath" - in Bosnia and Herzegovina

Our goal is raising awareness about pulmonary hypertension and providing support to patients. We are the only association for patients with pulmonary hypertension in Bosnia and Herzegovina advocating for better position of patients within our country.

Covers:

• Pulmonary Hypertension

Association of patients with asthma, allergies and atopic dermatitis

The Organisation for Patients with Allergies, Asthma and Atopic Dermatitis (AAA), a not-for-profit organization is the only patient organization for people with atopic diseases in Bosnia and Herzegovina, with an unique online community of more than 10 000 patients.
Our vision is to be recognized as the most trusted ally serving the asthma and allergy community.
AAA mission is dedicated to saving lives and reducing the burden of disease for people with asthma and allergies through support, advocacy, education and research.
Our core values are: · Patient-Centric · Compassion · Trust · Advocacy · Innovation ·

Covers:

• Allergies
• Asthma

A Breath of Hope, Italy

A Breath of Hope, is an association of patients, doctors and volunteers that helps people with Idiopathic Pulmonary Fibrosis (IPF) to get out of a condition of isolation and wants to accompany them on a path of treatment for a diagnosis that is difficult to face. The association has proactive purposes with the aim of helping to support patients with IPF and rare lung diseases, and their families. The goal is to stimulate institutions, raise awareness and support research through a path to be shared.

Covers:

• Idiopathic pulmonary fibrosis

Union of Lung Transplant Patients – Padua, Italy

Our organisation was founded by a group of lung transplant recipient patients in order to support patients with rare lung diseases before and after a transplant.

Covers:

• Lung transplantation

Women Against Lung Cancer in Europe (WALCE) is a non-profit Organisation founded in 2006, based in Italy and networking at the European level and completely dedicated to people affected by lung cancer and their families. The main focuses are the education and the support of patients as well as awareness and primary prevention campaigns for the general public. WALCE is actively working to reduce disparities in access to diagnostics and care and to improve the extensive molecular screening, access to clinical trials and innovative treatments in Europe.

Covers:

• Lung cancer

Association Pulmonary Hypertension Moment Plus Macedonia

Association Pulmonary Hypertension Moment Plus Macedonia is established as a non-partisan, non-governmental, and non-profit organisation, established on the basis of freely and voluntarily expressed will of its members united to protect the rights of people pulmonary hypertension and its assisting of the city of Gevgelija, the Republic of Macedonia and beyond.

Covers:

• Pulmonary Hypertension

Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA Ukraine)

PHURDA assists in providing patients with pulmonary hypertension (children and adults) with information, psychological, legal, medical assistance in the form of medicines and medical equipment, information support before and after transplantation of the heart, lungs, heart-lung complex.

Covers:

• Pulmonary Hypertension

Japan Federation of Patient Organizations for Respiratory Diseases

Founded by the Japanese Respiratory Society (JRS) is this major patient organisation for respiratory disease in Japan. Respiratory professionals and patients working together to for better respiratory medicine and care.

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