Dear HAEi youngsters,

As you may recall, the “Youngster Track” at the 2016 HAE Global Conference in Madrid was a great success. Since then a large group of youngsters have kept in touch via social media. It is wonderful to see how the youngsters enjoy the opportunity of having a truly global network of fellow HAE patients, with whom they can share experiences and ideas!

The Executive Committee of HAEi has therefore unanimously decided to arrange a “HAEi Youngster’s Summer Camp” in 2017 to further support and encourage our young patients in the global HAE community.

We are delighted to inform you that the first HAEi Youngster’s Summer Camp now is a reality, and will take place from Thursday 3 August until Sunday 6 August 2017 in Frankfurt, Germany.

Who is eligible to participate?

  • The youngster (and/or companion) must be member of the national HAE member organization, and must be able to communicate in English
  • The youngster must be between 12 and 25 years old
  • NOTE: a youngster age 12-15 is only eligible if they travel with a companion such as a brother/sister who will be at least 18 years old at the time of travel OR an adult care giver (parent/guardian/partner)
  • The youngster must be a patient with a diagnosis of C1-inhibitor deficiency HAE type 1 or HAE type 2 only – as confirmed by a doctor’s letter
  • The Companion must be a sibling/partner/parent or guardian of a patient with a diagnosis of C1-inhibitor deficiency HAE type 1 or HAE type 2 only
  • The youngster with HAE must have enough HAE medication (acute therapy) to cover the entire trip
  • Ideally, anyone with HAE who attends the Summer Camp is capable of self-administration

Travel and accommodation

HAEi will pay for:

  • Round trip flight tickets for the youngster attending the camp, plus their companion as required (sibling/partner/parent or guardian) from their home airport to Frankfurt.
    • Arrival in Frankfurt on Thursday 3 August 2017 and departure from Frankfurt on Sunday 6 August 2017
  • HAEi will also pay for transfers to and from Frankfurt Airport to the venue.
    • Note, HAEi will not pay for transfers to and from your home to your home airport
  • Accommodation at the 4-star Hotel NH Frankfurt Mörfelden in single, double, or triple room for three nights.
    • For the youngster, plus their companion as required
  • Meals as follows:
    • 3 August: Dinner
    • 4 & 5 August: Breakfast, lunch, and dinner
    • 6 August: Breakfast
  • All scheduled activities during the Camp itinerary period
  • This includes sessions at the hotel and a possible excursion

There will be a registration fee per participant of EUR 75.

Registration

Registration for the 2017 HAEi Youngster’s Summer Camp will go live on 10 March 2017.

As part of the registration process, parents or guardians will be required to upload a ‘Confirmation to Participate’ document for their Youngster and/or the companion. This document will need to be signed by (1) themselves, and (2) the youngster’s HAE physician (for youngsters with HAE) who confirms that the youngster with HAE is medically fit to travel to, and participate in, the Summer Camp. 

The 'Confirmation to Participate' document is now available. Please download it HERE, complete it, scan it, and upload it during the registration process.

At HAEi we are excited about this opportunity for our youngsters, and look forward to seeing as many as possible in Frankfurt this summer. As we have a limitation on the number of participants, we recommend that you register as soon as possible to secure your participation in this conference. Please observe that you are not finally confirmed until you have received and approved a travel itinerary from our travel agency 'Marine Travel'.

Best wishes,
Your HAEi Team

 

Registration