Rare Lung Diseases of Latin America Foundation

Rare Lung Diseases of Latin America Foundation Rare Lung Diseases of Latin America Foundation Rare Lung Diseases of Latin America Foundation
Our MissionAbout UsIMPACTRARE LUNG DISEASESABOUT PCDPATIENT STORIES

Our Mission

Our mission is to raise awareness of rare lung diseases in Latin America, providing support for diagnostic tests, facilitating local diagnoses, treatment, and research. We aim to empower physicians through training, engage the community, and seek philanthropic support to improve the lives of patients and families.

Rare Lung Diseases of Latin America Foundation

About Us

 The Rare Lung Diseases of Latin America Foundation, is where breath knows no borders. Our goal is to raise awareness and offer support to pediatric patients grappling with rare lung diseases throughout Latin America. With a special focus on Primary Ciliary Dyskinesia (PCD), a genetic disorder affecting the respiratory system, we embark on a journey of advocacy, education, and community outreach. Through these efforts, we aim to foster understanding, encourage early diagnosis, and uplift the lives of those navigating the complexities of PCD and other rare lung conditions in the Latin American region. Join us as we breathe beyond borders, promoting a future where every breath is one of hope and resilience.

 

Our Team

Dr. Ricardo Mosquera

Inspired by my daughter born with Down syndrome, I've developed innovative approaches for caring for children with medical complexity, reducing fragmentation, improving outcomes, and lowering costs. Our program, serving as an enhanced medical home, provides world-class care for vulnerable children. Furthermore, I have pioneered different models of healthcare delivery, including establishing a multidisciplinary clinic for children with congenital diaphragmatic hernia, pulmonary hypertension, Primary Ciliary Dyskinesia, and, most recently, an outreach model of care for rare lung diseases in Mexico. Our programs functions as an enhanced medical home, delivering world-class care for the most fragile and vulnerable population of children, both medically and socially. Moving forward, our objective is to sustain this high degree of quality research and expand our program for Latin America.

Our Partners

Information coming soon

Impact

Outreach Program

This program was launched with the recognition that Primary Ciliary Dyskinesia (PCD) is frequently underdiagnosed in Latin America due to limited awareness, scarce diagnostic resources, and the absence of established guidelines. Our initiative began with a pilot project across various Latin American countries, and it has now found full implementation exclusively in Mexico.


Our approach is patient-centric, involving engagement with local pulmonologists in Latin America. We deliver informative presentations at national conferences in their respective countries, sharing insights and resources to enhance PCD awareness and diagnosis. The PCD team provides direct contact information to local pulmonologists, fostering collaboration and resource accessibility. To further our commitment to comprehensive care, we offer an opportunity for Latin-American physicians to undergo specialized PCD training at our Houston center. In the past year alone, our center has received 120 referrals for PCD and is actively treating 65 patients diagnosed with the condition.


In Mexico, we provide hands-on training for local pulmonologists, equipping them with essential skills such as obtaining nasal ciliary biopsies, measuring nNO, utilizing HSVMA, and implementing airway clearance techniques. Additionally, we extend our support by assisting local physicians during telemedicine visits for their PCD patients, ensuring that patient care remains at the forefront of our mission

 

Referrals

The graphic illustrating "Patients Referred from Different Regions of Mexico" serves as a visual representation of how broad our outreach program has been able to impact across Mexico. It highlights the geographic diversity and widespread reach of the program, showcasing that patients are coming from various regions across the country. 

By visualizing the distribution of patient referrals, the graphic emphasizes the program's ability to extend its services to a wide and diverse population. It conveys that the impact is not confined to a specific locality but spans multiple regions, indicating a comprehensive and inclusive approach to healthcare outreach. . Our program, serves as an enhanced medical home, provides world-class care for vulnerable children. Furthermore, the program has pioneered different models of healthcare delivery, including establishing a multidisciplinary clinic for children with congenital diaphragmatic hernia, pulmonary hypertension, and Primary Ciliary Dyskinesia (PCD). 

Pending . . .

Information coming soon

Rare Lung Diseases

Cystic Fibrosis

 Cystic fibrosis (CF) is a genetic disorder that leads to the accumulation of mucus, causing damage to organs, especially the lungs and pancreas. Common signs include salty-tasting skin, persistent coughing, frequent lung infections, wheezing, poor growth, weight loss, greasy stools, bowel movement difficulties, and infertility in males. Over time, the buildup of mucus and infections can result in permanent lung damage, including fibrosis and cyst formation. CF is caused by genetic changes in the CFTR gene, inherited in an autosomal recessive manner.


Many rare diseases, like CF, lack comprehensive information. Additional information that is being researched at this time is a population estimate, symptoms that may manifest at any time in life, a genetic cause, available patient organizations for support and advocacy, and the possibility of detecting the disease through newborn screening tests performed soon after birth.


Regarding the onset of symptoms for CF, they can manifest at any point in life, and the age at which symptoms begin varies among different diseases.

Pending

Will update. Please hold! Information is currently being updated.

 

Pending

Will update. Please hold! Information is currently being updated.

 

About PCD

Primary Ciliary Dyskinesia (PCD)

 Primary Ciliary Dyskinesia (PCD) is a rare genetic disorder that affects the function of cilia, which are tiny hair-like structures in the respiratory tract, ears, and other parts of the body. These cilia play a crucial role in clearing mucus, bacteria, and debris from the airways. 


Key Features of PCD: 

  • Respiratory Symptoms: Children with PCD often experience chronic respiratory symptoms, including persistent cough, recurrent sinus infections, and ear infections. These symptoms are a result of impaired ciliary function. 
  • Neonatal Respiratory Distress: Some infants with PCD may exhibit respiratory distress shortly after birth, characterized by difficulty breathing and low oxygen levels. 
  • Ear and Sinus Infections: Chronic ear infections and sinusitis are common in children with PCD due to impaired clearance of mucus and bacteria from the respiratory passages. 
  • Laterality Defects: PCD can be associated with laterality defects, meaning certain organs may not be in their usual position. This can include heart defects or the positioning of internal organs. 


Management and Treatment: 

While there is no cure for PCD, management involves addressing symptoms and complications. Treatment may include: 

  • Antibiotics to manage infections. 
  • Respiratory therapies to help clear mucus and improve lung function. 
  • Regular monitoring of lung health. 
  • Possible surgical interventions for specific complications. 


Importance of Early Diagnosis: 

Early diagnosis of PCD is crucial for better management and improved quality of life. It allows for the initiation of appropriate interventions to address respiratory symptoms and prevent complications. 


A multidisciplinary approach involving pediatric pulmonologists, otolaryngologists, and other specialists is often necessary to provide comprehensive care for children with PCD. Genetic counseling may also be recommended for families affected by this rare genetic condition. 


Patient Stories

Please check back!

We are currently working on updating our patient stories section. Please check back soon for updates.  

 


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