SPANISH HEREDITARY ANGIOEDEMA ASSOCIATION

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Efficacy and Safety of BCX7353 to Prevent Angioedema Attacks in Subjects With Hereditary Angioedema (APeX-1)

This 2-part study will evaluate the safety and efficacy of an oral treatment, BCX7353, in preventing angioedema attacks in subjects with hereditary angioedema (HAE). In Part 1 of the study, eligible subjects will be randomized to receive oral BCX7353 or placebo for 4 weeks. Assuming successful completion of Part 1, additional subjects will be randomized in Part 2 to one of 2 lower doses of BCX7353 or placebo. The study will compare the number of acute attacks in each treatment group, as well as a number of other clinical and pharmacologic outcomes, and the safety and tolerability of each dose of BCX7353 compared to placebo.

Site contact details for Spain:

Hospital La Paz, Madrid:

Dr. Teresa Caballero

Tel.: 917 277 144

Mobile: 645 497 976

Hospital Bellvitge, Barcelona:

Dr. Ramón Lleonart

Email: rlleonart@bellvitgehospital.cat

Hospital Vall d’Hebrón, Barcelona:

Dr. Mar Guilarte

Tel.: 932 746 203

Hospital Virgen del Rocío

Dr. Teresa González-Quevedo

Tel.: 955 013 058

Email: mtgonzalezq@gmail.com

For more information (in Spanish), click here

 

3rd HAE Global Conference

The 2016 HAE Global Conference took place in Madrid (Spain), under the Presidency of Honor of Her Majesty Queen Letizia of Spain, on May 19-22, 2016. The theme of this Global Conference was “Creative Advocacy for Expanding Access to Therapy”. Read report (in Spanish).

Acknowledgement of receipt (in Spanish) received from the Royal Household of Spain

Patient Workshop: Jerez de la Frontera (Andalusia), 25 October 2016

The 10th regional Workshop for Patients with HAE was held on 25 October 2016 in Jerez de la Frontera (Andalusia), from 5:00 to 8:00 pm, in Hotel NH Avenida Jerez, Avda. Alcalde Álvaro Domecq, 10 – 11405 Jerez de la Frontera.

To see the press release (in Spanish), click here

Patient Workshop: Tarragona (Catalonia), 7 October 2016

The 9th regional Workshop for Patients with HAE was held on 7 October 2016 in Tarragona (Catalonia), from 5:00 to 8:00 pm, in Hotel SB Ciutat de Tarragona, Plaça Imperial Tarraco, 5 – 43005 Tarragona.

To see the press release (in Spanish), click here

 

CAMINO DE SANTIAGO 2017

Are you ready for the 2017 Camino Walk?
After the very successful HAEi/AEDAF Camino Walk on the legendary Camino de Santiago in northwestern Spain during the days leading up to the HAE Global Conference 2016 in Madrid, quite a number of people have expressed an interest in repeating the experience in May next year.
Consequently HAEi has decided to go ahead and try to organize a Camino Walk to commemorate the global awareness day for HAE haeday :-) in 2017.
If a sufficient number of people sign up to fill one bus – or more – we will follow the well-known format: departure by bus from Madrid on Saturday 13 May, three days of walking with 15 to 20 kilometers per day on average, and return to Madrid on Wednesday 17 May. The third day of walking, when we would arrive at Santiago de Compostela, would appropriately coincide with haeday :-) in 2017. Returning to Madrid on 17 May, we would give the people who plan to attend the 10th C1 Deficiency Workshop in Budapest plenty of time to go there for the beginning of the event.
However, to organize another Camino Walk, HAEi needs to have fairly soon a reliable estimate of the number of people who would be participating.
Therefore, we kindly ask anyone interested to contact his or her national organization to find out how many people would be interested in going. Right now we are not asking for a formal commitment or registration, but we would like to know how many people are reliably serious about taking part in this event. When considering taking part in the 2017 Camino Walk please bear in mind that:

-There will no HAEi travel grants to/from Spain

– The price could be more or less the same as this year (200 EUR per person in shared double room/295 EUR per person in single room), but it may very well be more expensive
– There probably will not be as much leeway to accommodate people who cannot or do not want to do all the walking, i.e. most likely there will be no “Plan B” except for emergencies.

INTERESTED IN TAKING PART?

We would like to receive information from anyone interested in taking part in the 2017 Camino Walk as soon as possible. Please reply to Steen Bjerre at: s.bjerre@haei.org or Sarah Smith at: s.smith.foltz@haei.org.

Hae Camino Walk 2016

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WHAT TO DO IN AN EMERGENCY

WHAT TO DO IN AN EMERGENCY

In the event of an emergency (serious attack, and in particular inflammation of the tongue, throat or airway):

Go immediately to the emergency room of your hospital or the healthcare clinic nearest you. Always take with you your medical report, the AEDAF membership card if you have one and your rescue medicine (Berinert® or Firazyr®) if you keep it at home.

If you cannot go to a hospital or clinic because of your condition or lack of transportation, immediately call the emergency call center telephone 112.

You can also try to call AEDAF – tel. 629 477 566 – to ask for more advice.

También puede intentar llamar al teléfono de AEDAF – 629 477 566 – para pedir más consejos.

Use our interactive map and find resources near you

View World Map on HAEI.org

Reach out to AEDAF

Welcome to AEDAF, the Spanish Association for HAE patients

Welcome!

Welcome to AEDAF. Here we give you a voice.

From this portal you can send us your doubts, questions, suggestions. You can propose activities and let us know about any you are aware of. A mailbox where we all have our space.

Complete this form to contact us

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