25th Anniversary of Alfa 1 Spain
On the last day of February we celebrate the day of rare diseases and for next April we plan the commemoration of European Alfa 1 Day and the 25th anniversary of Alfa 1 Spain.
Furthermore, this coincides with the IV national meeting of patients, families and professionals.
This year it will be organized in the beautiful city of Zamora, and will take place on the weekend of April 19 to 21, just before April 25, the official date on which European Alfa 1 Day is celebrated.
We invite you to live a unique experience
This experience promises to be very complete, starting with the information days, in which medical professionals, specialists in alpha 1 deficiency.
Presentations will be organized to inform attendees about news and recommendations for patients and families.
In addition, there will be time to attend walks along the Camino de Santiago in the surroundings of the city, where you can chat and share experiences.
It is also planned to organize mindfulness and nutrition sessions that promise to improve the lives of those who attend these sessions.
Assistance from specialists in Alpha 1 Deficiency
In Spain we are fortunate to have great professionals, international references.
Therefore, during these days we will receive you to learn about the medical advances that are taking place.
The following specialist speakers in pulmonology will participate in this meeting:
- José Mª Hernández, coordinator of the Spanish Alpha-1 Antitrypsin Deficiency Network.
- Francisco Casas, pulmonologist at the San Cecilio University Hospital in Granada
- María Torres, coordinating pulmonologist of the Galician Alfa-1 Center, of the Álvaro Cunqueiro Hospital.
- Francisco Dasi, researcher at INCLIVA Valencia.
- Beatriz Martínez-Delgado researchers at the Carlos III Health Institute.
Our history
Alfa 1 Spain was founded 25 years ago, the initiative of which was a few patients, back in 1999.
Currently there are more than 600 affected, and we also have strong alliances with Portugal and the most recent coalition with the Alpha-1 Europe Alliance, which brings together groups from across the continent.
Alfa 1 Spain 25th anniversary program
Organized activities
If you are interested, you can now register to participate in the IV national patient meeting.
It is a weekend full of activities, which includes accommodation and food, the management of which is entrusted to the España Alfa 1 association.
PROGRAM ADVANCE
25th anniversary of Alfa 1 Spain
THURSDAY, APRIL 18, 2024
Arrival of participants
FRIDAY, APRIL 19, 2024
09:30 Group walk: Camino de Santiago-Vía de Levante.
16:30 Mindfulness: a tool that improves the quality of life (session I), with Cándida Bueno (psychologist).
17:30 Nutrition workshop: with Claudia Zurdo. Dietitian and nutritionist.
SATURDAY, APRIL 20, 2024
MORNING
09:30 Inauguration of the day and commemorative event for the 25th Anniversary of Alfa 1 Spain.
Participants:
- Dr. José Mª Hernández. Pulmonologist. Nuestra Señora de Candelaria University Hospital (Santa Cruz de Tenerife). Coordinator of the REDAAT National Committee.
- Fernanda Aspilche, president of Alpha-1 Europe Alliance.
- Fernando Pinto, president of Alfa-1 Portugal.
- Mariano Pastor, president of Alfa-1 Spain.
10:00 Alfa-1 Update Table: Presented and moderated by Mariano Pastor, president of Alfa 1 Spain
10:00 Liver disease and AATD: Diagnosis and prevention
Dr. Henedina Antunes. Head of Pediatric Service, São Marcos Hospital, Braga, Portugal.
- Responsible for the Gastreenterology, Hepatology and Pediatric Nutrition Consultation.
- Researcher at the Institute of Life and Health Sciences (ICVS) of the School of Health Sciences of the University of Minho.
10:40 The DAAT Update: Prevention of respiratory infections
Dr. Francisco Casas. Pulmonologist. San Cecilio University Hospital (Granada).
- Director of the Andalusian Alfa-1 Center and member of the REDAAT National Committee.
12:00 Coffee Break
12:30 The new Galician itinerary for patients with AAT as a care and follow-up model
Dr. María Torres. Pulmonologist. Álvaro Cunqueiro Hospital (Vigo).
- Member of the Galician Alfa-1 Center and the REDAAT National Committee.
AFTERNOON
13:10 Asthma and AATD: Myth or reality
Dr. José Mª Hernández. Pulmonologist. Nuestra Señora de Candelaria University Hospital (Santa Cruz de Tenerife).
- Coordinator of the REDAAT National Committee.
13:50 How they help research into DAAT
Dr. Beatriz Martínez, Carlos III Health Institute (Madrid).
- Slim. Researcher. Department of Molecular Genetics of the Rare Diseases Research Institute.
- Member of the National Committee of REDAAT.
14:20 Closing of the day.
Participants:
- Abilio Mota. 2nd Vice President of Alfa-1 Spain.
- Fuensanta Soria. Delegate in Catalonia of Alfa-1 Spain
- Diego Alba. Member of Alfa-1 Spain
17:00 Walk: Camino de Santiago-Vía de la Plata.
NIGHT
20:00 Mindfulness: a tool that improves the quality of life (session II), with Cándida Bueno (psychologist).
SUNDAY, APRIL 21, 2024
09:30 Meeting of associated patients of Alfa-1 Spain: Promotion of associations.
11:30 Walk: Route of the bridges (Zamora)
Tarde: Regreso participantes.
Walking routes
The Association organizes group walks, touching sections of the Camino de Santiago de la Vía de la Plata and the Camino de Levante in the area of Zamora, and through the center of the city.
In all cases, there will be support from support vehicles and oxygen supply, to ensure that all participants can participate in the activity regardless of their physical condition.
Participants will be divided into two groups, depending on the physical condition of each person.
The action aims to promote physical exercise and direct contact with nature as basic tools to improve quality and life expectancy.
We also want to facilitate and consolidate relationships between patients and create social ties.
On the other hand, as in previous projects, the Association coordinates the IV National Patients’ Meeting, taking responsibility for hotel and subsistence reservations.
Source: Centro Andaluz Alfa 1, FEDER, Alfa 1 España
