3 -5 June
3 days
Ophthalmology study
Friday 3
Leisure activities
for kids and adults
About
Since 2000, the Spanish Aniridia Association has celebrated without fail this meeting in which families from all over Spain come together to share experiences and attend different activities.
In 2022, this meeting will take place simultaneously with the European Aniridia Conference and will be open to patients from all countries.
Throughout 3 days different activities will be carried out. While adults can attend the morning sessions of the conference, children will enjoy leisure activities with monitors and, in the afternoon, there will be family activities so that all patients can meet each others.
Who can participate?
This meeting is aimed to people living with aniridia and their families and partners.
Spanish Aniridia associates can participate freely, they must write to aniridia@aniridia.es for further information.
What includes?
- Attendance to morning and afternoon plenary sessions at the Conference – except professionals’ working tables. (Saturday with no voice). Simultaneous interpretation English – Spanish both days.
- Ophthalmology consultation and genetic assesment on Friday, June 3 from 12:00 pm to 18:00 pm.
- Leisure activities all weekend for patients and family members between 4 and 17 years. Transfer included.
- Leisure activities for both adults and children on Saturday morning. Transfer included.
- Accommodation with breakfast.
- Meals and coffee breaks (Saturday and Sunday) and patients dinner on Saturday.
Accommodation
The accommodation for families and patients will take place at the San Juan Complex in San Juan de Alicante.
The tickets include 2 nights accommodation. It is possible to book more nights. From the third night onwards, they must be paid by the attendant at the hotel. They are not included in the price.
San Juan Complex is specialized in medical Conferences. There are several rooms secured. There are several accommodation options: single, double, double, triple and even quadruple rooms. On the registration form you can specify which type of room you require.
The organisation will take care of the hotel booking.
Leisure activities
(SUSCEPTIBLE TO CHANGE)
SATURDAY 4TH JUNE
MORNING ACTIVITIES: (FROM 8,45H – 11:00H)
Activities in the Resort.
ACTIVITIES WITH THE FAMILY: (FROM 11:00H – 14:15H)
gymkana Ali-cántara (city tour with activities) in the old downtown in Alicante city and the Santa Bárbara castle.
AFTERNOON ACTIVITIES: (FROM 15:30H – 19:15H)
Aqua activities in the beach.
SUNDAY 5TH JUNE
MORNING ACTIVITIES: (FROM 8,45H – 14,15H)
Activities in the urban vegetable patch. Plant a tree and mini Olympic games in the hotel resort.
Draft program
Friday 3 June
12:00 pm to 18:00 pm
Ophthalmology examination and genetic assessment at Vissum Miranza. Only for patients. Transfer included.
Saturday 4 June
8:45 am to 11:00 am. Patients and family members between 4 and 17 years old will be pick up to leisure activities.
9:00 h. Welcome message. Prof. Jorge Alió y Sanz, Miguel Hernández University; Barbara Poli, Aniridia Europe; Yolanda Asenjo García, Spanish Aniridia Association; Local Authorities
9.30 h. Introduction of the agenda and presentation of the Monographic issue on Aniridia in “Archivos”, scientific review of the Spanish Ophthalmology Society SEO and statistical report of Aniridia in Spain. Prof. Jorge Alió y Sanz, Miguel Hernández University; Spanish Aniridia Association.
10.00 h. Molecular diagnosis of Aniridia and allied conditions. Dr. Marta Corton, Jiménez Díaz Foundation University Hospital-IIS, Spain.
10:30 h. Role of the European Networks and Registries in the development of new therapeutic strategies for Aniridia. Prof. J. Carlos Pastor. IOBA. Emeritus Professor University of Valladolid
11:00 to 14:15 Leisure and cultural activities in Alicante for adults and kids. Transfer included.
14:15 h. Lunch
Saturday Afternoon
15:30 h. to 19:00 h. Patients and family members between 4 and 17 years old will be pick up to leisure activities.
15:30 h. Aniridia-net COST action CA18116: European cooperation in aniridia research. Chairperson: Dr. Juliana Martínez Atienza.
17:20 h. Coffee Break
17:35 h – 19:00 h Highlights. Rapid Fire Sessions. Aniridia Europe Research Award.
20:30 h. Patients dinner at Complex San Juan
Sunday 5 June
8:45 am to 14:15 pm. Patients and family members between 4 and 17 years old will be pick up to leisure activities.
9:00- 12.00 h. Saturday panels summary for patients by a representative of each table.
- 9.00-9.25 h. Genetics Basis Summary.
- Prof. Carmen Ayuso, Jiménez Díaz Foundation-IIS, Spain
- 9.30- 9.55 h. WAGR Spectrum Summary.
- 10.00-10.25 h. Anterior Chamber Summary.
- 10.30-10.55 h. Posterior Chamber Summary.
11:00 h-11.20 h. Coffee Break
- 11.30- 11.55 h. Saturday COST Action Summary.
- Prof. Neil Lagali. Linköping University, Sweden
12:00 h. Round tables for patients.
12.00-13.00 h. Social inclusion at school:
-
- 12.00-12.30 h. Early attention and stimulation. Sonia Rodríguez, Spanish National Organisation of the Blind (ONCE)
- 12.30-13.00 h. European project: “School for all, Seeing the invisible”. Victor García. RedTree.
13. 00-13.45 h. International collaboration and life story:
-
- 13.00-13:15 h. Collaboration and support to Spanish speaking countries. Spanish Aniridia Association
- 13:15 to 13:30 h. Living with Aniridia. Yolanda Asenjo, Spanish Aniridia President, Spain
13:45 h. Official closing act. Prof. Jorge Alió y Sanz, Miguel Hernández University; Barbara Poli, Aniridia Europe; Ivana Kildsgaard, Aniridia Sweden; Yolanda Asenjo García, Spanish Aniridia Association; Local Authorities
14:15 h. Lunch
Ophthalmologic study
Patients with aniridia or their relatives could ask for a free study with a specialist in ophthalmology.
Expert doctors experienced in aniridia and optometricians will be doing consultations the day before the conference starts on Friday 3 June from 12:00 pm to 18:00 pm. They are available only to people with a Patients meeting ticket by appointment.
The study will take place in Vissum Miranza facilities. Transfer included.
Pricing
Spanish Aniridia Association members
FREE
Members companions (from 4 years old)
Family member or partner of a person with aniridia who is a member of the AEA.
100 euros
Person with aniridia from 4 years of age (not AEA member)
80 euros
Aniridia person’s companion, whether minor or adult.
Companions of people with aniridia who are not members of the entity.
135 euros
Attendees without aniridia
People without aniridia who come to Patients Meeting without accompanying patients
150 euros.
This prices include:
- Assistance to morning sessions at the Conference. (Saturday with no voice). with simultaneous interpretation English – Spanish both days.
- Ophthalmology consultation and possible genetic study (not confirmed) on Friday, June 3 from 12:00 pm to 18:00 pm (by appointment).
- Leisure activities all weekend for patients and family members between 4 and 17 years. Transfer included.
- Leisure activities for both adults and children on Saturday afternoon. Transfer included.
- 2 nights accommodation with breakfast.
- Meals and coffee breaks (Saturday and Sunday) and patients dinner on Saturday.