Minority Respiratory Diseases

1st Andalusian Conference on Minority Respiratory Diseases

It will take place on March 3 and 4, 2023 in the Multipurpose Room of the San Cecilio Clinical University Hospital (free attendance until full capacity).

Organized by: The Pulmonology Service of the San Cecilio Clinical University Hospital and the Pulmonology Service of the Virgen del Rocío University Hospital.

On the occasion of the World Day for Rare Diseases, last Tuesday, February 28, emblematic buildings and monuments scattered throughout various cities in Spain were illuminated to give visibility to people who live with minority pathologies.

Minority respiratory diseases represent approximately 3% of all rare diseases (www.orpha.net) and, as in other rare diseases, delays in diagnosis and uncertainty about it are very common due to difficulties in professionals to accumulate experience on rare diseases or access leading specialists in these diseases.

For the whole of the European Union, a rare disease will be one that does not affect more than 227,000 people.

If it is estimated that there are between 7,000-8,000 diseases that affect 6-7% of the general population, in the European Union between 27-30 million people could be affected, in Spain between 2.5-3 million people and in Andalusia, approximately 500,000 people.

OBJETIVES

From Andalusia, the Pulmonology Services of the HU Clínico San Cecilio in Granada and the HU Virgen del Rocío in Seville, have come together to carry out this 1st Andalusian Conference on Minority Respiratory Diseases.

The 1st Andalusian Day of Minority Respiratory Diseases is celebrated

In accordance with the World Day for Rare Diseases, an event has been organized that will take place on March 3 and 4 in the Assembly Hall of the HU Clínico San Cecilio in Granada.

Meeting attendees

This Conference is aimed at pulmonology, digestive, pediatrics and nursing professionals interested in rare respiratory diseases (alpha-1 antitrypsin deficiency and cystic fibrosis), has the endorsement of the Spanish Society of Pneumology and Thoracic Surgery (SEPAR), the Association of Pulmonology and Thoracic Surgery of the South (NEUMOSUR), as well with the endorsement and with the participation of the Alfa-1 Spain Association and the Andalusian Association of Cystic Fibrosis.

The proposed initiatives are the following:

Basic training on alpha-1 antitrypsin deficiency (AATD) and cystic fibrosis (CF).
Provide resources, strategies and skills to pulmonology, paediatrics, digestive and nursing professionals for the approach to patients with AATD and CF.
Know the vision of patients and their associations with minority respiratory diseases and specifically AATD and CF.
Work as a team with patient associations to enhance their work to support those affected, improve the knowledge of society and institutions about respiratory diseases and encourage research.

Program of the 1st Conference on Minority Respiratory Diseases

Friday, 3rd of March

15–16:40 Work lunch
16:45– 17 h. Opening

Manuel Reyes Nadal. Director gerente del H.U. Clínico San Cecilio
Manuel Gallardo Medina. Jefe Servicio de Neumología. H.U. Clínico San Cecilio
Esther Quintana Gallego. Jefa Servicio de Neumología. H.U. Virgen del Rocío
Francisco Casas Maldonado. Coordinador Unidad FQ Adultos y Centro Andaluz Alfa-1 del H.U. Clínico San Cecilio.