Asociación de afectados por la enfermedad
de Telangiectasia Hemorrágica Hereditaria
o síndrome de RENDU OSLER WEBER

NOTICIAS V ASAMBLEA

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PROGRAM OF THE V TH SPANISH HHT ASSOCIATION MEETING

Publicada por asociacion el 29.08.2009 - 277 lectura/s.

PROGRAM OF THE V TH SPANISH HHT ASSOCIATION MEETING
PARADOR DE SAN MARCOS (LEON), OCTOBER 10-11 2009

Saturday October 10:

Registration and welcome cocktail at Parador de San Marcos (St. Marc, Square, Leon) from 19 pm to 21 pm. People travelling on saturday to Leon may be registered and pick up the documents on the meeting, as well as to attend a welcome cocktail offered by the association. Saturday registration will avoid delays on Sunday.

Sunday October 11:

Morning Session:

9.00am to9.30 am : Extended registration for those arrived on Sunday. Saint Marc Hostery.

9.30 am to 10.00 pm:Official opening of the IV th meeting of the Spanish HHT association by theboarding committee.

10.00 am to 11.00 am – Scientific News: -
The concept of translational research in HHT, by the Prof Carmelo Bernabéu main researcher of the CIBERER (network of groups working on biomedical research of rare diseases) group number 707 (25 minutes).
-Preclinical studies on pharmacological therapies, immunology andHHT molecular diagnosis carried outin the CIB (CSIC) Madrid,byDr Luisa-María Botella, staff researcher of CIB (CSIC) (25 minutes).
Questions for both presentations: 10 minutes.

11.00 am to 11.30 am coffee break.

11.30 am to 13.20pm-Clinical aspects
-The reference centre for HHT in Spain: clinical report by Dr Roberto Zarrabeitia, of the HHT unit of Sierrallana. (25 minutes).
-The detection method of arteriovenous malformations in lung by echocardiography with bubbles by Dr. JA Parra. From the cardiology department of Valdecilla Hospital (20 minutes).
Questions for both interventions: 10 minutes.

Different ENT techniques to treat epistaxis by the specialists:
-Dr Darío Morais fromValladolid showing the results of his patients by esclerotherapy. (10 minutes).
-Dr Blanca Señaris from Sierrallana, and the electrocoagulation technique (10 minutes).
-Dr Carmelo Morales from Valdecilla/Sierrallanawhich will talk on the septodermoplasty surgical technique (10 minutes).
-Questions to these interventions (10 minutes). Rapid Rhino presentation, a quick and easy method to control epistaxis by the commercials of Arthocare (10 minutes).

13.20 pm to 13,40pm-Prof. Juan Luis Vives Corrons The experience from the rare anemia network: organization to attend to the patients and the therapies.
13.40pm -13.50pmQuestions

Lunch: 14 to 16 pm.

Evening session

16 pm -17pm -Spanish HHT association.
-Report on the association activities for the last 2 years by theassociation secretary, D. Oscar Caberol.
-Report by the accountant of the association, D. Manuel Machado and aprobation of the financial report of years 2008 and 2009.
-Report of the president, D. Santiago de la Riva.
-The boarding committee will ask for elections and renewal of the charges in the HHT Spanish association.

17.30pm – 18.00pm-Coffee Break

18.00 pm-20,00 pm-Open debate, where the patients and their families are the protagonists.
Legal, clinical, and other aspects will be exposed by the patients wishing to express their views. In the moderation table, we will count with a lawyer expert in HHT sentences, D. Ignacio Gonzalez. Mrs. Montse Vives, from the Spanish HHT association will chair the patient interventions.

IMPORTANT REMARK ON THE QUESTIONS BY THE PATIENTS:
To include as many questions as possible, we ask those who want to intervene, to send an e-mail to montsevives1@gmail.com , exposing the matter, or a letter to the address of the Spanish HHT association:Agustinos de León, 39, 24010, Leon

FRATERNITY DINNER OF THE SPANISH HHT ASSOCIATION: From 22.00 pm in the evening we will celebrate a dinner for all the patients, families and friends at the “Pink Room”of Saint Marc Hostery.

NOTE: Inscriptions, welcome cocktail and lunch of sunday are free offered by the Spanish HHT association. Fraternity dinner will be free for associates paying the fee, otherwise, those wishing to participate in the dinner should pay 40€ by bank transfer to the account number: 2100 6187 05 0200020844,indicating as concept the name of the persons attending the dinner.