FIL Family Weekend 2024
Join us at the very first FIL Family Weekend: connecting, learning, and empowering together
We are excited to announce a memorable event for Facial Infiltrating Lipomatosis (FIL) patients. Living with an ultra rare condition can feel isolating, especially when it’s challenging finding others. This event is an opportunity for individuals affected by FIL to come together in a supportive and inclusive environment. Patients will have the chance to meet others with FIL for the very first time and connect with those who truly understand their experiences.
This weekend is also an opportunity to gain valuable insights from leading medical professionals. Doctors will be presenting the latest developments on different topics, ensuring you stay informed about the most recent advancements in FIL research and treatment.
Taking place in Zandvoort, the Netherlands, this event is primarily focused on European patients, but its impact reaches far beyond geographical borders. The presentations will be accessible online for everyone after the event.
Details
- Date: March 9 – 10th, 2024
An exclusive extra day for adult patients will be held on March 8th, 2024, creating a space for deeper discussions and networking opportunities. - Location: Beach Hotel Zandvoort (Center Parcs), the Netherlands.
The hotel is situated near Amsterdam, right by the beach, offering access to an indoor playground for kids and the Aqua Mundo water park.
Costs
For this event, we ask a fee of €25 per person. Apart from this contribution, we are pleased to inform you that HEVAS will cover the expenses of your hotel accommodation, breakfast, lunch, dinner, and activities. Direct family members of children are welcome to join, and adult patients are also welcome to bring a companion if desired. Active involvement in the event’s activities is expected from all patients and accompanying family members. For patients, the fee of €25 per person will include a one-year HEVAS membership (January – December 2024). This membership will automatically expire after one year.
We understand that financial constraints might hinder some individuals from attending the event, be it due to travel expenses or the €25 per person contribution. If you face such challenges, please reach out to us at info@hevas.eu. We are committed to ensuring that all who wish to be part of this experience have the opportunity, and we will work together to find a solution.
Photos and after movie
We’re excited to capture the magic of this special event through the lens of an amazing photographer and video maker on Saturday, March 9th, 2024. Their presence will ensure that every cherished moment and meaningful connection is preserved for later.
An aftermovie capturing the highlights of our time together will be shared online via YouTube and our website after the event. We understand that not everyone might be comfortable appearing in the video. If you’d prefer not to be recognizable in the video, simply let us know when you sign up, and we’ll take the necessary steps to ensure your privacy.
Registration
Registration for the FIL Family Weekend is currently closed and was open until October 31st, 2023.
Reach out if you would like to register after this date. There will be a waiting list in case spots become available.
Please note that the fee of €25 per person must be paid no later than October 31st, 2023, to secure your participation in the event. After your registration, we will provide you with further payment instructions.
Frequently Asked Questions
- How many participants are expected to attend?
Approximately 30 patients and families have expressed their interest in joining the event. - I’m not from Europe; can I still attend?
Absolutely! Although the event is focused on European patients, you are more than welcome to join. Currently, we have confirmed the attendance of two patients from the USA and Australia as well. - What is the easiest way to get to the location?
If you’re coming by car, you can easily input ‘Beach hotel Zandvoort Center Parcs’ into Google Maps for real-time traffic updates. On-site parking spots will be available.
For those traveling by plane, the most straightforward option is to take a train from Schiphol. You can find up-to-date schedules and fares here: ns.nl (approximately €8 per person when purchasing tickets online). - Will there be childcare provided during the presentations for my child?
Children under the age of 10 should always be accompanied by one of the parents, while the other parent can attend the presentations. This approach ensures a safe and enjoyable experience for both parents and children, and also takes into consideration the potential language barrier that most kids might face.
If only one parent is attending the family weekend with a young child, our volunteers offer childcare support. This will allow the attending parent to fully engage in the presentations. Please note that our volunteers speak Dutch, English, and German. - Is it possible to extend my stay by a day or arrive a day early?
Yes, Center Parcs has provided discounted rates for extended stays. You will need to cover these additional nights yourself.
To make a reservation, please send an email after November 1st, 2023 to business.zv@centerparcs.com and include your name, address, phone number, and mention that you’re attending the HEVAS Family Weekend. The prices are:
Friday, March 8th: €117.00 per room per night (including breakfast). Max 2 persons per room.
Sunday, March 10th: €107.00 per room per night (including breakfast). Max 2 persons per room.
An additional bed per room is available for €45 per night.
Please note that there is an additional city tax of €4.20 per person per night. - What can we do at the location (Center Parcs)?
Your stay includes complimentary access to the highly popular swimming pool Aqua Mundo and indoor playground Baluba. There also are many different outside playgrounds and a free petting zoo. Other (paid) activities that are available on-site are bowling, trampoline jump town, gametown with video games, laser battle, squash and much more. There are also many restaurants and a mini supermarket. - When does the event start and end?
The event begins on Saturday, March 9th, 2024, at 11:00h and ends on Sunday, March 10th, at 12:00 (check-out time). After check-out, you’ll still have access to the indoor playground and pool all day. - Can I bring other family members such as grandparents, aunts, or uncles?
No, this event is exclusively intended for FIL patients and their immediate family members. - My English is not very good; will this be an issue?
While the event and presentations will be held in English, fluency is not a requirement. - What is the weather like in the Netherlands?
In March, the average temperature is around 7 degrees Celsius. It’s recommended to pack warmly and with layers, so kids can remove layers when they’re active. Note that rain is common in March. - Is there an option to participate online?
The event is exclusively for in-person attendance. - I don’t have FIL, but do have another PIK3ca (PROS) condition, can I join?
This event is exclusively organized for FIL patients. However, we would like to inform you that the GOPI3KS charity is hosting an event in the UK for all PROS patients, on November 2023, which you might find of interest. Please contact Mandy Sellars: gopi3ks@yahoo.com. - Why do I have to pay a fee?
Considering the substantial expenses associated with this event, including hotel accommodation, dining and activities, a fee of €25 per person is required from all attendees. New patients will automatically receive a one-year membership, valid from January to December 2024, as part of their registration. - What does a HEVAS membership mean?
Your membership is essential for our continued existence and to secure the backing we receive from the Dutch government. With your membership, we can assist patients seeking guidance both offline and online, connect them with medical professionals, arrange webinars, and organize events such as the family weekend you’re currently participating in. Moreover, you gain access to HEVAS-organized activities. You are more than welcome to join our annual event in 2024 in the Netherlands. Although the annual HEVAS event is conducted in Dutch, we are delighted that our attendance includes German and Belgian patients each year. - Do I need to take any steps to cancel my HEVAS membership?
No, you don’t have to do anything. Your membership will automatically expire at the end of 2024. We will send you a reminder towards the end of the year, and for those who wish to continue supporting HEVAS, you can choose to do so. - How can I make the payment of €25 per person?
After your registration, we will provide you with further payment instructions. Please note that the fee of €25 per person must be paid no later than October 10th, 2023, to secure your participation in the event. You can make the payment using PayPal, Credit Card, or direct bank transfer. - I signed up but cannot come, what should I do?
We understand that plans can change unexpectedly. If circumstances prevent you from attending after registration, we kindly request that you notify us as soon as possible. It’s important to be aware that after December 10th, 2023, the venue imposes non-refundable substantial costs upon HEVAS. Your timely communication and commitment are of utmost importance in ensuring a successful event while effectively managing associated expenses. The €25 per person fee, which is part of the registration, will be used to cover a portion of these expenses in case of cancellations after December 10th, 2023. Your understanding and cooperation in this matter are greatly appreciated. - Will there be more FIL family weekends in the future?
It’s a possibility! Although there are no immediate plans, we are considering the prospect of organizing another weekend in the future.
If you have any further inquiries, please don’t hesitate to reach out to us at info@hevas.eu or contact Wilma directly.