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.

It is a non-profit organization oriented to fight for health rights, raise awareness of the disease, support patients.

• Facebook: https://www.facebook.com/ELSALVADORASHAP?mibextid=ZbWKwL

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.

• • Facebook: https://www.facebook.com/Asociacion.ADAR
  • Twitter: https://www.instagram.com/adar_oficial/
  • LinkedIn: https://www.linkedin.com/in/adar-asociaci%C3%B3n-dermatitis-at%C3%B3pica-argentina-134bba179/
  • Instagram: @adar_oficial
  • YouTube: https://www.youtube.com/@asociaciondermatitisatopica

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.

• • • Facebook: https://www.facebook.com/PulmonaryHypertensionKSP/
    • LinkedIn: https://www.linkedin.com/company/pulmonary-hypertension-knowledge-sharing-platform/?viewAsMember=true
    • Instagram: https://www.instagram.com/ph_ksp/

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.

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

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.

• • Facebook: https://www.facebook.com/respiraeinspirahapsureste
  • LinkedIn: https://www.fundacionrespiraeinspira.org
  • Instagram: Fundación Respira e inspire
  • Other Social Media: @frespiraeinspira
  • YouTube: https://www.fundacionrespiraeinspira

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.