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.

• • Facebook: https://www.facebook.com/fundacionfundem?mibextid=ZbWKwL
  • Instagram: https://www.instagram.com/1010karensilva?igsh=MWF5N2FwNTJhdm92Yw==
  • YouTube: https://www.youtube.com/@fundacionfundem720

Apav is an institution that provides support to patients and families. In Argentina there are around 87 patients connected with us.

• Facebook: https://www.facebook.com/share/uFP549kpjyhRTzL1/?mibextid=qi2Omg
• Twitter: https://x.com/APAVfundacion?t=7SdtbNzzpTIgksfmHA-cRQ&s=09

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.

• • Wechat: iseekph

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.

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.

• • Facebook: https://www.facebook.com/allergiesquebec
  • LinkedIn: https://www.linkedin.com/company/allergiesquebec/mycompany/verification/
  • Instagram: https://www.instagram.com/allergiesquebec/
  • YouTube:  https://www.youtube.com/channel/UC_WZ_khgkBj5e58esTTXFbQ?view_as=subscriber

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.

• Facebook: https://www.facebook.com/profile.php?id=100084336994662
• LinkedIn: https://www.linkedin.com/in/health-care-association-of-nepal-1a7a1829a/

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.

• Facebook:https://m.facebook.com/p/COMMUNITY-AND-FAMILY-AID-FOUNDATION-100051182296304/
• LinkedIn: https://gh.linkedin.com/pub/dir/joseph/senyo+kwashie

DAH association is a non-profit organization that gathers patients suffering from pulmonary hypertension from all over Bosnia and Herzegovina. Members of the association are, in addition to patients, members of their families, as well as doctors. Their work is to raise awareness about pulmonary hypertension, point out the difficult situations of patients, fight for equal rights for all patients, and provide support to patients every day.

• Facebook URL : https://www.facebook.com/plucnahipertenzijabosneihercegovine
• Instagram URL:  https://www.instagram.com/phbih_dah/?hl=en
• YouTube URL: https://www.youtube.com/@plucnahipertenzijabih5537

Allergienet is a Belgian patient organization, a self-help group and advocacy organization for all people with allergies (atopy and type 2 inflammation). Our target audience includes all patients suffering from allergic symptoms or related conditions. We are particularly active in the field of atopic dermatitis, chronic urticaria, allergies, hay fever, food allergies, and anaphylaxis. Our active members are volunteers, and we aim to provide assistance where it is most needed. This can range from personal support and guidance, conducting awareness campaigns, to nationwide advocacy and everything in between. We are officially recognized as a charity in Belgium and are members of the Flemish Patients’ Platform. We seek to promote and support research and collaboration with other stakeholders. We strive for patient empowerment, improved quality, and a more holistic approach. We offer help and support to all.

• Facebook URL: https://www.facebook.com/Allergienet
• Instagram URL: https://www.instagram.com/allergienet/
• YouTube URL: https://www.youtube.com/@allergienet3578

PHURDA provides; Hotline/consultation on confirmation of diagnosis, access to medications, access to medical equipment, and access to transplantation. Advocacy/appeal to state and local authorities to protect the rights and interests of patients. Consultation with a psychologist. Assisting with medications and medical equipment with documented evidence of need and in order of priority. Providing temporary asylum (during martial law in Ukraine). Organizing meetings for patients. Organizing chat rooms for patient communication. Organization of training and internships for Ukrainian doctors in Ukraine and abroad.

• Facebook URL:  https://www.facebook.com/profile.php?id=100008303044326
• Instagram URL:  https://instagram.com/cfsisterdalila_phurda?igshid=NTc4MTIwNjQ2YQ==
• YouTube: https://youtube.com/@user-cj4jm3td1d?si=JzXT2E2ROu0ux_vN

This organization seeks to significantly influence the country’s public policies, as an organization free of conflicts of interest, to promote the exercise of the right to health before decision-makers and the population. Their projects have focused on Tobacco Control, Smoking Cessation, Conflict of Interest, Harmful Use of Alcohol, Prohibition of Trans Fats, Universal Health Coverage, Non-communicable Diseases, Asthma and soon, Mobility and Road Safety. In 2018 they received the Bloomberg Cessation Award at the World Tobacco or Health Conference, held in March 2018 in Cape Town, South Africa. Recently, in May of this year Salud Justa Mx received the World No Tobacco Day 2023 Award, presented by PAHO. Its director, Erick Antonio Ochoa, received this year the 2023 Judy Wilkenfeld International Award. This distinction was awarded to a Mexican for the first time.

• Facebook link: https://www.facebook.com/SaludJustaMx/
• Instagram link: https://www.instagram.com/SaludJustaMx_/
• Twitter link: https://twitter.com/i/flow/login?redirect_after_login=%2FSaludJustaMx
• YouTube link: https://www.youtube.com/channel/UCEbL5bIsy9aOoVqIRAw1Phg

This organization aims to begin the first registry of people diagnosed with respiratory diseases. Provide support to patients so that they have access to specialized medical care, empower the patient with teaching to understand and manage their disease. They also work to raise awareness among the population. They also carry out advocacy actions to update patient care according to scientific advances. Organize support groups and psychological support. Create alliances with civil and medical organizations for institutional strengthening.

• Facebook URL: https://www.facebook.com/profile.php?id=100094619271629
• Instagram URL: https://www.instagram.com/fundacion_panama_respira/?hl=es

The main objective of Chile Asma Fundacion is to promote the right of everyone to public, decent and quality health. Both in the medical, pharmaceutical, and social fields, where every respiratory patient can have access to a correct health program. Some of the services they offer to their patient community are to educate, make visible, guide, and be able to share experiences among the patients themselves. They operate online and in person.

• Facebook URL: https://www.facebook.com/Fundacionchileasma/
• Instagram URL: https://www.instagram.com/fundacionchileasma/

It is the Mission of Right2Breathe® to provide Education, Awareness, Free Screening, and Resources for people who are currently diagnosed or at higher risk of being diagnosed with respiratory disease. We believe that Everybody has a Right2Breathe.  The old adage, “When you do what you love, you don’t work a day in your life” applies to much more than just one’s career choices. We believe that the world is a better place when people use their gifts and talents to follow their dreams. Our mission is to inspire, educate, and empower people living with lung disease to rekindle the fire for their passions while providing the information necessary for them to take action. In addition to the patient community, we provide education for caregivers who support them and the clinicians who treat people living with respiratory disease.

• Facebook URL: https://www.facebook.com/Right2Breathe.org
• Twitter URL: https://www.twitter.com/Right_2_Breathe/
• LinkedIn URL: https://www.linkedin.com/company/right2breathe/
• Instagram URL: https://www.instagram.com/Right_2_Breathe/
• YouTube Channel: https://www.youtube.com/@right2breathe349

Company Info: The Non-communicable Diseases Alliance Kenya (NCDAK) is a Non-Governmental Organisation, registered in 2012 under section 10 of the NGOs Coordination Act 1990, registration number OP.218/051/12-0125/8213. With a vision of “NCD-free Kenya”, NCDAK seeks “to be the lead membership organisation in Kenya on all matters pertaining to NCDs“, in order to contribute to the reduction of the preventable burden of morbidity, mortality and disability due to NCDs through multi-sectoral collaboration at the county and national levels, to ensure the highest attainable standards of health and productivity throughout the life cycle for sustainable socioeconomic development. Thus NCDAK seeks to promote a NCD responsive policy environment through: advocacy, capacity building and knowledge management, meaningful engagement of people living with NCDs and resource mobilization. As the leading organisation NCDs advocacy, the focus to gather current evidence that inform advocacy towards access.

• Facebook: https://www.facebook.com/NCDAK2013
• Twitter: https://twitter.com/NCDAK
• LinkedIn: https://www.linkedin.com/company/75047265
• Instagram: https://www.instagram.com/ncdalliancekenya/
• YouTube Channel: https://www.youtube.com/channel/UC-tHpCIulS2i6LhtRS6cB6A/

The Colombian Foundation for Lung Cancer, Asthma, COPD, and other respiratory diseases – INSPIRAT, is a non-profit organization whose objective is the social development and representation of individuals and families affected by respiratory diseases. With the efficient use of human, technical, and financial resources, the foundation provides quality services, with equity and opportunity to the population, contributing to the elimination of barriers to access to health services and developing scientific, cultural, recreational, innovative, and social service activities to support through research, treatment, and care of respiratory diseases to support through research, treatment, and awareness of these diseases.The foundation pursues charitable purposes, common interest or utility, improvement of the quality of life, and social interest. It intervenes in pathologies such as lung cancer, asthma, COPD, respiratory syncytial virus, chronic rhinosinusitis with nasal polyps, pulmonary fibrosis, and Alpha-1.

• Facebook: https://www.facebook.com/FundacionInspirat/
• Twitter: https://twitter.com/InspiratCol
• Instagram: https://www.instagram.com/fundacioninspirat/

Fundación Padece provides assistance to patients, diagnosed and seeking diagnosis, of chronic immune-mediated dermatological diseases. of chronic immune-mediated dermatological diseases. It promotes the wellbeing and integral health of those suffering from Hidradenitis Suppurative Hidradenitis, Psoriasis, Atopic Dermatitis, Vitiligo and Chronic Urticaria, working together with the medical society.

• Facebook: https://www.facebook.com/padece.chile
• Twitter: https://www.twitter.com/padece_chile
• LinkedIn: https://www.linkedin.com/company/82115247/

Instagram URL: https://www.instagram.com/padece.chile Assign to Contact

The purpose of the Association will be as follows: a) Develop activities that promote knowledge of Pulmonary Hypertension and related lung diseases; b) Unite patients and families so that together they recognize and meet the needs of patients c) Support other associations that have similar fines. d) Promote and participate in activities that favor the interests of patients. e) Advise and help patients obtain specific medications for their disease. We have a national presence in the Republic of Costa Rica

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

Skin and allergic diseases organization has been providing informational, legal, and psychological support to patients with asthma and allergies for more than 10 years. They are working with government agencies to improve access to effective treatment for patients. They hold many events, such as school for patients, conferences, research on patients problems, assistance in accessing treatment. The organization has several resources and many subscribers among patients. They are also members of GlobalSkin and IFPA.

• YouTube: https://www.youtube.com/channel/UCLfw1rV6JUMAvVrIvbAjE9g/featured?disable_polymer=1&themeRefresh=1
• Instagram: https://www.instagram.com/skinallergic.ru/
• Facebook : https://www.facebook.com/skinallergic/