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.
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.
Israel
47, David HaMelech Street, Rosh Haayin, Center District, Israel
972522731071
Mira Vardi
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.
Costa Rica
Ruta Nacional Primaria 10, Cartago, Provincia de Cartago, Costa Rica
50671082515
Nancy Elena Rivas Elizondo
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.
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.
Argentina
894, Doctor Enrique Finochietto, Buenos Aires, Ciudad Autónoma de Buenos Aires, C1272, Argentina
Silvana Monsell
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.
El Salvador
Calle El Jabali, Santa Tecla, La Libertad, El Salvador
Alba Cornejo
It is a non-profit organization oriented to fight for health rights, raise awareness of the disease, support patients.
Argentina
1689, Viel, Buenos Aires, Ciudad Autónoma de Buenos Aires, C1424, Argentina
Mónica Ladner
An association of patients and relatives of patients with atopic dermatitis, who seek to improve the quality of life of those who suffer from this disease, providing training, information, guidance, support and containment. They are a referral center for those diagnosed with atopic dermatitis and a link between patients and doctors who really want to be trained and help to improve the symptoms of the disease.
Belgium
40, Rue Washington, Ixelles, Bruxelles, 1050, Belgium
Pisana Maria Ferrari
The Alliance for Pulmonary Hypertension (AfPH) was registered in Brussels (Belgium) as an international non-profit organisation (IVWZ) in 2020. Its current membership includes as full members the pulmonary hypertension patient associations from Belgium (HTAP Belgique and Pulmonale Hypertensie vzw), France (HtaPFrance), Germany (pulmonale hypertonie e.v.), Greece (Hellenic Community for Pulmonary Hypertension), Italy (AIPI – Associazione Ipertensione Polmonare Italiana OdV), Latvia (Pulmonālās hipertensijas biedrība), Netherlands (Stichting Pulmonale Hypertensie), Poland (Polskie Stowarzyszenie Osób z Nadciśnieniem Płucnym i Ich Przyjaciół), Turkey (Pulmoner Hipertansiyon ve Skleroderma Hasta Dernegi) . PHA Japan is an associate member. he AfPH’s mission is to promote the sharing of knowledge and expertise about pulmonary hypertension across the community and engage in collaborative activities to address unmet patient needs and help improve access and efficacy of pulmonary hypertension.
Italy
82, Via Melchiorre Gioia, Milano, Lombardia, 20125, Italy
Elena Radaelli
National organization based in Milan, Italy and RUNTS registered. They have obtained the omalizumab therapeutic plan for 12 months and ad libitum according to clinical prescription. They also created networks of clinicians throughout Italy who, together with the association, promote research and treatment of urticaria. They have activated numerous projects at regional and national level for scientific dissemination related to urticaria and for the improvement of therapies and services for Italian urticaria sufferers. They actively collaborate with UCare Centers whose leaders are members of its Scientific Committee and is an independent association formed by patients.
They are a Foundation of people with Pulmonary Arterial Hypertension, including family members who are also part of the foundation, with the aim of creating awareness and dissemination of this health condition, and promote knowledge and information, in cooperation with the Medical and Civil Society. They are joining with other Foundations to join different Pathologies such as asthma, chemical fibrosis, etc. The aim is to be updated and as informed as possible. Thir iactivitiesnclude psychological sessions, activities, medical support, they participate in rehabilitation with another foundation. They are joining different foundations worldwide. They are training leaders from different states to continue reaching more people. They are bes in Merida, Yucatan, Mexico.
Colombia
##127b-16, Avenida Carrera 9, Bogotá, Bogotá, 110121, Colombia
Xiomary Bermudez
FUNDEM is a non-profit entity that dedicates its efforts to the well-being of the population with high-cost and orphan chronic diseases, providing programs aimed at patients and caregivers; such as access programs, monitoring, support in the different services that the patient requires, accompaniment and information about pathologies. And also health and social services that positively impact well-being and quality of life. Fundem was created on March 31, 2006, after a group of patients expressed the needs and situations that they were affected after a diagnosis and its founders took the initiative to create an organization that would satisfy the needs that were addressed. They currently have a number of 5,000 patients and through social networks 5.5 million have been educated about their pathology and care. Located in the city of Bogotá, however they operate at the national level.
Argentina
553, José Dolores Este, Villa Krause, San Juan, Argentina
Romina Gonzalez
Apav is an institution that provides support to patients and families. In Argentina there are around 87 patients connected with us.
Beijing Aixike Pulmonary Hypertension Rare Disease Care Center is the first public welfare organization in China to provide support and assistance to patients with pulmonary hypertension. In 2009, it was initiated and established by patients with pulmonary hypertension, various parties and caring people across the country. In 2013, it officially opened in Beijing. Aixike has accelerated the introduction, research and development and inclusion of drugs in medical insurance by carrying out a series of educational and publicity activities such as Blue Lip Classroom, Love Lung Rebirth Program, Blue Lip Photography Exhibition, and World Pulmonary Artery Day. The process has improved the medical community and the public’s understanding of pulmonary hypertension and rare diseases, and has gradually improved the quality of life of Chinese patients. With the help of caring people, they will continue to safeguard the equal rights and interests of patients in medical care, education, employment, travel, etc., and promote joint decision-making between doctors and patients and the improvement of related systems. Currently, more than 2,000 patients and 100 medical professionals have joined.
Rare Diseases Foundation of Iran (RADOIR) was established in 2008 as the first and only rare patients non-governmental organization by the deceased Dr. Ali Davoudian. After 2 years of national approaches and efficient activities, RADOIR was approved to start international collaborations. Dr. Ali Davoudian achieved international memberships at EURORDIS, RDI, ICORD and consultative status at ECOSOC and etc… “Nader Specialized Clinic” developed and run by RADOIR’s founder is supporting RADOIR and the rare patients with 24 hours medical services.
Canada
4388, Rue Saint-Denis, Montréal, Québec, H2J 2L1, Canada
Dominique Seigneur
Allergies Québec’s mission is to promote the safety and improve the quality of life of those who have to cope with food allergies, through information, support, education, training and awareness programs. It is Quebec’s leading reference center for food allergies, and brings together allergists, nutritionists, pharmacists, institutions – schools, daycares, hospitals – and food companies.
Asthma and Allergy Foundation of West Africa serves as a platform for asthma patients and people living with allergies in Gambia, Sierra Leone, Liberia and Guinea Bissau, to enable them to tackle the myriad challenges they are confronted with collectively. Among their objectives is to offer voluntary medical services to people with asthma and allergies and assist them to be healthy and become proactive, productive and self-reliant within society. They also work hand-in-glove with the government of the day, local institutions, international organizations, and philanthropists to provide moral, material, and financial support to people with asthma and allergies. Furthermore, they try to regularly update data on the true prevalence of asthma in Gambia so that the government becomes aware of the implications of this increasing disease burden and to investigate the relative importance of underlying risk factors such as rising urbanization in their policy and health planning responses to this challenge.
HCAN was founded with the vision of establishing a healthcare system in Nepal that is not only sustainable but also ensures equity for all. Our team is comprised of dedicated medical professionals driven by a shared passion to effect positive change in healthcare delivery, medical education, and public health throughout Nepal.
These areas include the development of medical education, the promotion of health equity, empowerment of women, support for child education, environmental sanitation, fostering youth leadership, poverty eradication, and the pursuit of sustainable energy development.
Currently, our focus is on the integrated and sustainable management of chronic conditions such as hypertension, COPD, and diabetes. These conditions impose a substantial burden on the health of the population, and we believe that addressing them comprehensively is essential for the well-being and development of Nepal.
Community and Family Aid Foundation (NGO) is a Ghanaian REGIONAL Non-Governmental Organisation with a global and local content thinking currently exclusively identified with promoting the empowerment of women, communities, and young people to manage issues concerning their development and to advocate for and work towards rights and well-being; to advocate for and on behalf of young people, in the area of mental health, environment, health, education, climate change, and other related issues that affect their total development. They aim at hosting the largest effort of reaching out to the youth of Ghana to appreciate and respond to their sexual health rights needs for a bright future and promote their development toward the nation’s building.
Do you want to update any information from your organization on this page? Contact us