HAE Friends around the Globe!

The 2016 HAE Global Conference in Madrid, Spain was a memorable gathering of 528 patients, caregivers, physician/researchers, and pharmaceutical company representatives from 52 countries throughout the globe.
Please enjoy the highlights of Madrid 2016!

Warm regards,

Anthony J. Castaldo
President, HAEi

Delegates from all over the world

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Delegates

The 2016 HAE Global Conference in numbers

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Delegates
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Country presentations
7 % attended the HAEi Youngster track
20 % attended the Scientific track
74 % attended the Patient track

Program highlights

Keynotes

  • Mr. Mark Skinner, World Federation of Hemophilia; Experiences from hemophilia and the importance of patient advocacy
  • Prof. Jacob Geihm Mikkelsen, Department of Biomedicine, Aarhus University, Denmark; Juggling with genes for cellular modeling and therapy of HAE
  • Prof. Marc Riedl, US HAEA Angioedema Center at UCSD, San Diego, California, United States of America, and Prof. Markus Magerl, Charité University Hospital, Berlin, Germany; Improving HAE Care

Documentary

  • Advance screening of “Special Blood”; an intimate look into personal lives and struggles of HAE patients in America

Scientific program

  • 8 abstracts chosen for presentation at the conference
  • 25 abstracts accepted for poster presentation

Patient program

  • 16 country presentations given
  • HAE disease primer for patients and caregivers

Youth program

  • Tourniquet competition
  • Conference vlog

Youth Program

The most recent initiative from the 2016 HAE Global Conference

For this conference we created at special track for youngsters, who are diagnosed with HAE.

We wanted to create at space, where youngsters could talk with other youngster their experiences and challenges with HAE.

See the country presentations

Conference Delegates

Top 5 Topics from the 2016 HAE Global Conference

  1. Networking / exchange of experiences with patients, speakers, pharmaceutical companies
  2. Individuel country presentations
  3. Education: Medicines and study information
  4. Scientific sessions / research presentations
  5. New informations e.g. new medications
“Being newly diagnosed less than 2 years ago, aged 56, I found the whole content of the conference extremely informative”
Delegate
“It was great to be social and meet other people and hear their stories”
Delegate
“The feedback from the youngsters from our country was fantastic. I think this was a great addition to this years conference”
Delegate
“The country reports are so important as I picked some great ideas around advocating in my own area. They helped me clarify my vision for what I want to do in my community”
Delegate
“Mark Skinner was amazing as were all the presenters… Being able to view Special Blood… Amazing”
Delegate
“Q&A session with the Physicians was most informative. Their kindness & patience with us is appreciated and rewarding”
Delegate
97% of respondents rated the conference as either “extremely useful” or “useful”
60% of respondents rated the majority of presentations as “very good” or “excellent”
97% of respondents would attend the HAE Global Conference in the future

Enjoy some of the great moments from the 2016 HAE Global Conference

General highlights from the conference

“Special Blood” trailer

Highlights from the youngsters’ session

Three Quick Questions for HAE patients

Mark Skinner, World Federation of Hemophilia on the importance of patient advocacy

Doctors and patients comment on the development within HAE

Useful information from the conference

We asked you what information you especially take with you from the 2016 HAE Global Conference. It is of course different answers based on whether you participated as a patient or as a professional.

HAE patient or care giver

– Volunteer for clinical trials
– When to treat, take action immediately. Keep a diary of attacks
– Different medications available now, and coming in the future
– Home treatments needed for all patients

Health care professionals

– Guided future research efforts
– Create diagnostic and management plans for use colleagues
– Very helpful to dedicate time to HAE exclusively
– Research topics and treatments being used

Honorary Committee and Presidency of Honor

Her Majesty the Queen of Spain agreed to accept the Presidency of Honor for the HAE Global Conference

Other members of the Honorary Committee:

  • Juan Carrión Tudela, President, Federación Espanola de Enfermedades Raras (FEDER)
  • Alfonso Alonso Aranegui, Minister of Health, Social Services and Equality
  • Joaquin Sastre Dominguez, President, Sociedad Espanola de Alergologia e inmunologia Clinica (SEAIC)
  • Cristina Cifuentes Cuencas, President, Comunidad de Madrid
  • Anthony  J. Castaldo, President, HAEi

Moments from the 2016 HAE Global Conference in pictures

Sponsors of the 2016 HAE Global Conference

Diamond

Gold

Silver

Basic