ELF Patient Organisation Network

Pulmonary Hypertension Association the Netherlands

Covers:

• Pulmonary Hypertension

Stitching PIBO is a non-profit organisation dedicated to improving the diagnosis and treatment of Post-Infectious Bronchiolitis Obliterans (PIBO), especially in young children. They aim to raise awareness among parents and healthcare professionals, and support scientific research into its causes and consequences.

Covers:

• Interstitial lung disease
• Rare and orphan lung disease

As charitable foundation, we focus particularly on children and adolescents with post-infectious Bronchiolitis obliterans and Bronchiolitis obliterans Syndrom. Our dedication is to inform, support and help affected children and their families, and to link with specialized centers. In cooperation with the Childrens‘ University Hospital Frankfurt we support research projects that will lead to improvements in long-term outcome of affected patients.

Covers:

• Bronchiectasis
• Bronchiolitis
• Bronchopulmonary dysplasia
• Interstitial lung disease
• Rare and orphan lung disease

TB Europe Coalition (TBEC) is a regional advocacy network of civil society organisations and individuals in the WHO Europe region committed to end tuberculosis (TB). The network aims to strengthen the role of civil society within the regional response to TB, and ensure political and financial commitments to end TB.

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

The Association for Supporting MDR TB Patients (ASPTMR) started a support group for MDR patients in 2011. Now, they provide direct services for over 4000 TB patients. ASPTMR also advocate for those with TB and contribute to the TB Law in Romania.

Covers:

• Tuberculosis

The BHD Foundation offers a number of creative and useful resources to inform, empower and build up the BHD community, such as interviews with researchers and people affected by BHD, patient advocacy and creating public and patient-friendly information on the condition. It is directed towards families affected by BHD as well as researchers and health professionals.

Covers:

• Rare and orphan lung disease

The LAM Foundation urgently seeks safe and effective treatments, and ultimately a cure, for lymphangioleiomyomatosis (LAM) through advocacy and the funding of promising research. We are dedicated to serving the scientific, medical and patient communities by offering information, resources and a worldwide network of hope and support.

Covers:

• LAM
• Rare and orphan lung disease

Tracheo-Oesophageal Fistula Support (TOFS) offers support to all people born with the rare congenital conditions oesophageal atresia (OA) and tracheo-oesophageal fistula (TOF), commonly known as OA/TOF.  These conditions strike people across all ethnicities and personal situations, and the impacts are often lifelong.  Approximately 190 OA/TOF babies are born each year in the UK, and T.O.F.S. estimates the UK population of OA/TOF people as about 3500 children and 7500 adults.  T.O.F.S is a membership organisation registered as a charity and company limited by guarantee.  It is the largest English-speaking OA/TOF support group in the world. The majority of our membership lives is in the UK, but T.O.F.S has members in 70 countries worldwide. Our membership grows on average by 270 new members annually. Our mission is for those born with OA/TOF to be able to live unlimited, unconstrained by the impact of being born with these conditions.

Covers:

• Acute lower respiratory infections
• Bronchiectasis
• Rare and orphan lung disease
• Upper airways diseases

The Turkey SMA Foundation aims to ensure the active participation of individuals with SMA in our country in social life, to carry out activities that support the activities to be carried out by considering the benefit of patients and their families.

Covers:

• Lung disease in children
• Other lung diseases

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