National, Norwegian organization for patients and families of patients with CHD. They mainly work with spreading awareness and creating community, and also pulmonary hypertension (PH) since CDH patients always have PH.

• • Facebook: https://www.facebook.com/cdhno
  • Instagram: https://www.instagram.com/cdhnorge/

National Health Action Force Nepal”(NHAFN)[राष्ट्रिय स्वास्थ्य कार्यबल नेपाल] is a NG-NPO registered in District Administration Office, Kathmandu (Regd. No. 230-2080/81) and affiliated to Social Welfare Council (SWC No. 56573) which has roots and commitment to the Country, is established with a Vision and main Motto of “Healthier and prosperous Nepal”. It mainly advocates and works for Health Equity via inclusivity and fairness in healthcare access among the nominal Nepalese Citizens. It is run by highly skilled, professional health workers of the country via collaboration and teamwork. It’s a rapid response team with a sustainable rapid response and agility in dealing with health emergencies. It has a proactive approach to health related issues and works to deal with all the ailments and facets related to health with the Vision, Healthier and Prosperous Nepal.

• • Facebook: https://www.facebook.com/profile.php?id=61557223140341
  • Twitter (X): https://x.com/nhafnteam
  • LinkedIn: https://www.linkedin.com/company/national-health-action-force-nepal/

AAL. Informs and helps people allergic to latex in managing their social and working life and the various problems that may arise with healthcare facilities. Raises awareness among healthcare professionals with meetings, debates, conferences, seminars and publications on the risk linked to latex allergy. Collects certifications of latex free products and devices. Helps search and slice latex safe routes and structures.

• • Facebook: https://www.facebook.com/AALattice1https://allergiciallattice.org

The PCD Patients Association of Israel is a dedicated organization representing over 400 individuals affected by Primary Ciliary Dyskinesia (PCD). Established to serve the unique needs of PCD patients, the association has been active for over two decades, with a structured approach to advocacy and support for the past ten years. The primary objective of the association is to enhance understanding and awareness of PCD, particularly its treatment options and relationship to Cystic Fibrosis (CF). They strive to educate patients and healthcare providers about the best practices in managing PCD, emphasizing the importance of individualized care.

• Facebook: https://www.facebook.com/groups/162609269105064/?locale=he_IL

AEDESEO is the only national non-profit association dedicated to representing patients with EoE, that works tirelessly to improve the diagnosis and assistance to those who suffer from this pathology. Born from the initiative of a consortium of affected families, their mission is to strengthen a support network that mitigates the clinical and psychosocial challenges associated with EoE, significantly raising their quality of life. With more than 580 partners distributed throughout Spain, with a greater presence in Madrid, Catalonia and Valencia, AEDESEO offers comprehensive services that range from nutritional advice to emotional and social support.

• • • Facebook: https://www.facebook.com/aedeseo/?locale=es_ES
    • Instagram: https://www.instagram.com/aedeseo/
    • YouTube: https://www.youtube.com/@AEDESEO

Their association is a patient association run mainly by patients and their families, and we strive to create a better medical environment based on the relationships among their members. Their main activities include: Holding a national PH conference, Issuance of newsletter, Management of homepage, Collaborative activities with academic societies and Collaborative activities with overseas patient associations and academic societies.

The Italian Bronchiectasis Association APS is a patient association established in May 2019 with the intent to help people with non-Cystic Fibrosis-related (non-CF) bronchiectasis and their families, and to raise awareness of this little-known chronic respiratory disease, which cannot be detected without a CT scan and is often confused with other diseases. The association employs its own multidisciplinary Scientific Committee, which curates webinars to deepen the knowledge and management of bronchiectasis, offers guidance to specialized facilities for the treatment of bronchiectasis, creates mutual support among patients from all over Italy through the Community cares for psychophysical well-being with the pathway called “Neighborhoods and Wellbeing.” It dialogues with institutions to recognize greater recognition in terms of exemptions and disability. Our association has more than a hundred associations mostly women.

• • • Facebook: https://www.facebook.com/AIBbronchiettasie/
    • Twitter: https://x.com/bronchiettasie
    • LinkedIn: https://www.linkedin.com/company/aib-associazione-italiana-bronchiettasie/
    • Instagram: https://www.instagram.com/aibronchiettasie?igsh=MTVib2RnbW9lMjAyYg==
    • YouTube: https://youtube.com/@associazioneitalianabronch2379?si=XBSTVWwGoh3tm8o8

COPD Foundation South Africa who provides patient support groups, works on patient advocacy and provides patient education.

• Facebook: https://www.facebook.com/groups/1965120670388092

A young foundation, with the aim to support patients diagnosed with teaching for the knowledge of their disease, its prevention, control and treatments used. They support patients from all over the country, carry out support meetings, teaching talks with the support of medical specialists and health professionals, and also carry out awareness campaigns about the impact of the diseases, supported by the media. They presented to the Assembly of Deputies a request for a Law to support skin diseases. And succeeded in getting it approved and ratified by the Presidency of the Republic Law Nº370 (Of Tuesday, February 07, 2023) “Which declares of national interest the acquired and inherited diseases, disorders and conditions of the skin and its annexes.”

• • • Facebook: https://www.facebook.com/apep.panama/
    • Instagram: https://www.instagram.com/apep_panama/?hl=es-es

The Colombian Foundation for Orphan Diseases (Funcolehf) is a non-profit organization dedicated to improving the quality and quantity of life of families with orphan diseases such as Alpha 1 Antitrypsin disease and Cystic Fibrosis. Its services: Community Services Social Work Spiritual Group Training Support Specialists Integral Form Public Health Surveillance Economic Evaluation in Health Community Pharmacovigilance In addition, Funcolehf is dedicated to advocacy, intervene in public policy, be an entity of oversight and control before the superintendence of health, the Attorney General’s Office, Ombudsman, Ministry of Health supporting more than 1,000 families.

• • Facebook: https://www.facebook.com/Funcolehf/
  • Twitter (X): https://twitter.com/Funcolehf/
  • Instagram: https://www.instagram.com/funcolehf/

The Israeli Lung Cancer Foundation was established in April 2014. It is an apolitical organization that deals with issues related to patients at risk or who have suffered or suffering from lung cancer and their families. The Israeli Lung Cancer Foundation supports the oncology patient and his caregivers, including assistance in medical information, making inquiries about advanced treatments, prevention, early detection, and more. We are the voice and face of lung cancer patients, esteblished a sharing community and represent this comunity to stakeholders. The organization promotes the incorporation of lung cancer screening in the Israeli health system. It is a non-profit organization, committed to the code of ethics.

• • Facebook: https://www.facebook.com/ilcfil

They cover different areas such as:

Advocacy: Working with policymakers and healthcare providers to advocate for increased funding for research, improved access to treatment options, and reduced healthcare costs.

Public Awareness Campaigns: Launching public awareness campaigns to educate the general public about the impact of respiratory and bleeding disorders on patients’ lives.

Patient Education Materials: Development and distribution of educational materials, such as brochures, booklets, and videos, to help patients understand their condition, treatment options, and self-care strategies.

One-on-One Support: Matching patients with trained patient advocates who can provide one-on-one support, answer questions, and offer emotional support.

Clinical Trials: Facilitating access to clinical trials and research studies to advance understanding of respiratory and bleeding disorders.
Data Collection: Collecting patient data to track outcomes, monitor treatment effectiveness, and identify trends in disease progression.

• • • Facebook: https://www.facebook.com/profile.php?id=100079973672968

Lung Foundation Australia is the only charity and leading peak body of its kind in Australia that funds life-changing research and delivers support services that give hope to people living with lung disease or lung cancer. Since 1990, we have been working to ensure lung health is a priority for all, from promoting lung health and early diagnosis, advocating for policy change and research investment, raising awareness about the symptoms and prevalence of lung disease and championing equitable access to treatment and care.

• • Facebook: https://www.facebook.com/lungfoundation?locale=en_GB
  • Instagram: https://www.instagram.com/lungfoundation/
  • Twitter (X): https://x.com/Lungfoundation
  • YouTube: https://www.youtube.com/@thelungfoundation
  • LinkedIn: https://www.linkedin.com/company/lung-foundation-australia/posts/?feedView=all

The Association of Respiratory Nurses (ARNS) was established in 1997 as a nursing forum to champion the specialty respiratory nursing community, promote excellence in practice, and influence respiratory health policy. ARNS also works to influence the direction of respiratory nursing care. ARNS provides a supportive network and encourages information sharing, best practice and research collaboration through the website and regular email updates. ARNS supports its members by fostering networking with other respiratory specialists and organisations. ARNS encourages research by providing bursaries to its members. ARNS encourages and promotes new respiratory initiatives that improve respiratory care for patients. ARNS is run by nurses for nurses. Associate membership is offered to allied health professionals and those working in a non-clinical environment who are involved in respiratory care.

• Twitter: https://x.com/ARNS_UK
• Instagram: uk_arns

At the Lung Health Foundation, their unwavering commitment is to support and empower individuals living with lung disease across Canada. Through their range of community initiatives (virtual service offerings include Fitness For Breath approx. 500 people benefit/year, coaching for COPD, patients support groups and caregiver peer to peer program), grass-roots educational programs (supporting in-person support groups with speakers, working to offer healthcare professionals education through their annual conference Better Breathing Week), research (theyre-launched a research program with $800,000/annually so far) and advocacy (they have a strong advocacy presence federally and provincially – and are also the secretariat for the National Lung Health Alliance), they elevate awareness and foster a compassionate environment for those affected by lung conditions, including their caregivers. They are dedicated to improving the lung health of Canadians.

• Facebook: https://www.facebook.com/lunghealthfoundation/
• LinkedIn: https://www.linkedin.com/company/lunghealthfoundation/
• Instagram: https://www.instagram.com/lunghealthfoundation/
• YouTube: https://www.youtube.com/channel/UCH4Ap1iIYRH9n0KSrT66v6Q

The Respiratory Association was established with the aim of making life easier for patients and their families with respiratory diseases:
Asthma, COPD and bronchiectasis and to assist in their joint representation in the medical institutions and state bodies, with professionalism, fairness, transparency and faith along the way. In Israel there are about half a million patients with COPD and a million patients with asthma.

• Facebook: https://www.facebook.com/profile.php?id=100087469303499

The FEDERACION COSTARRICENSE DE ENFERMEDADES RARAS is an umbrella organization in charge of providing comprehensive support to rare disease patient organizations and their families, offering resources, information and guidance to face the challenges associated with rare diseases, strengthening the capacities of leaders of rare disease organizations, providing training programs, advice and mentoring to improve their capacity to support people with rare diseases and influence public health policies related to rare diseases, advocating for the rights and needs of patients and their families. They aim to reduce stigma and promote greater understanding and solidarity towards patients. They have eleven affiliated organizations and approximately two hundred patients with rare or ultra-rare diseases.

• Facebook: https://www.facebook.com/federacionenfermedadesrarascr/about

PinkTree Foundation is a non-profit patient organization focused on lung health. As the name suggests “Pink Tree” means healthy lungs. The aim of the Foundation is to provide awareness and services to patients who are diagnosed cases of lung health and offer disease and patient management to ensure they have a better quality of life.
The focus in the initial phase will be on diseases like Asthma, COPD, Obstructive Sleep Apnoea and Pulmonary TB. As they move ahead, the aim is to focus on other diseases like Lung Cancer and Cachexia in Tuberculosis. In the PinkTree Movement, the aim is to create awareness and education amongst the patients and their caregivers.
Patient advocacy is the central theme at PinkTree and they would like to partner with organizations who are equally motivated in working towards managing lung health.
At PinkTree, patient’s interest comes first.

The Asthma Foundation in Sierra Leone is a non-profit organization dedicated to addressing the challenges faced by individuals living with asthma and advocating for improved asthma care and management practices throughout the country. Founded with the mission of raising awareness, providing support, and fostering collaboration among stakeholders, the foundation plays a crucial role in addressing the growing burden of asthma in Sierra Leone.

Mission and Objectives:
The Asthma Foundation in Sierra Leone is committed to the following key objectives:
– The foundation aims to increase awareness about asthma and its management among the general population, healthcare professionals, and policymakers through targeted education and outreach initiatives.
– By providing accurate and culturally sensitive information about asthma symptoms, triggers, and treatment options.

• Twitter: https://AsthmaFound.com 
• LinkedIn: https://TheAsthmafoundationinSL.com
• Instagram: @AsthmaFoundationinSL

The Libra Foundation was created on May 23, 2008, its purposes are research and health promotion, both individual and community, at international, national, regional, provincial and municipal levels and disciplines related to chronic bronchopathy, rhinitis, asthma and other acute or chronic conditions that compromise health, as well as teaching, training, and dissemination of health, medicine and the beforementioned disciplines and their interdisciplinary approach.