Join Us in Ireland for an exciting and rare event for everyone affected by ichthyosis! 

Registration closes Friday 20th September 2024 - don't miss out.

We warmly invite individuals and families of all ages, and any type of ichthyosis – mild or severe - to join our event and community for a day of valuable information, updates, and discussions about the condition.

Special guests include Quoin Pharmaceutical company. Quoin are currently running clinical trials for four products that collectively have the potential to treat Netherton Syndrome, Peeling Skin Syndrome and Palmoplantar Keratoderma.

When?

12.00 noon Tuesday 29th - 2.00pm Wednesday 30th October 2024.

Why attend?

Join us for a special 24-hour event designed to bring together the ichthyosis community in a welcoming, inclusive environment. We warmly invite adults with ichthyosis, their families, parent carers, and young people of all ages, with any type and severity of the condition. This event offers valuable information, updates, and discussions in a supportive, understanding community, all within a unique and accessible venue perfect for everyone.

Medical Advisory Board members Dr Fiona Browne and Professor Alan Irvine are supporting and participating in our event.
Speakers and presenters are being added all the time.

Adults and parent carers can participate in discussion groups that focus on managing the physical and mental health impacts of ichthyosis. You'll hear from medical professionals, including dermatologists, dermatology nurses, psychologists, and guest speakers, along with the latest research updates and samples from pharmaceutical companies.

Young people will have the chance to connect, build confidence, and enjoy a variety of activities at Barretstown, from crafts including painting and pottery, to more grown up fun including zip lines, archery and canoeing - there's something for everyone!

Why Barretstown?

Our event takes place at a fairy tale castle in the beautiful foothills of Ireland's Wicklow Mountains. Barretstown offers fabulous conference facilities, and a mind blowing range of age related activities for young people. Onsite accommodation is great fun for adults and kids alike. You'll be able to stay privately on your own, just with your own family, or stay together with your friends in the ichthyosis community.

It was founded by Hollywood actor Paul Newman in 1994 and modelled on his renowned Hole in the Wall Gang Camp in Connecticut, USA. Another fun fact is that the door of the castle is reputed to have been painted red after Elizabeth Arden's famous brand of perfume Red Door, and remains this colour to this day. 

Expert Presentations and Support

• Hear from medical professionals, including dermatologists, dermatology nurses, and an ophthalmologist. The event will include presentations and discussion about how to treat ichthyosis including skin care routines, eye care and managing the psychological impact of ichthyosis. There is also a chance to gain insights into the genetic factors contributing to ichthyosis and how they impact the condition.
• Learn about latest research updates and insights from guest speakers.
• Meet medical and pharmaceutical companies, discuss products and take away samples to try, including ReLife
• Share information, tips and experiences with other members.
• Participate in smaller group sessions for specific types of ichthyosis* including Ichthyosis vulgaris, X-linked ichthyosis, Autosomal Recessive Congenital Ichthyosis (ARCI) (inc Collodion baby, Lamellar ichthyosis, Congenital Non Bullous Ichthyosiform Erythroderma, Harlequin ichthyosis, Bathing Suit ichthyosis), Epidermolytic ichthyosis (Bullous Ichthyosiform Erythroderma), Netherton syndrome plus others. Dermatologists and researchers will discuss these conditions in more detail.
• Special guests include Quoin Pharmaceutical company. If you have Netherton Syndrome, Peeling Skin Syndrome and Palmoplantar Keratoderma Quoin will be attending to talk to you directly about their ongoing clinical trials. 

*will be determined by types of ichthyosis of those attending  

*Evening - Tuesday 29th October* 

Everyone is invited to a social evening to spend time with each other. It may even be Halloween themed. Trick or treat 🎃!

Accommodation - Tuesday 29th October only

Staying onsite isn't just for the kids and families. Whatever your age, you'll love the onsite accommodation. The HideOut Building has 21 rooms, all of which sleep 4 people but can be used for single/double occupancy. The rooms are all en-suite and have a separate shower in the room too.

What does event registration include?

Your event registration includes all refreshments and activities, also lunch, dinner and overnight accommodation onsite on Tuesday 29th October, and breakfast and lunch on Wednesday 30th October. We can't wait to see you there!

REGISTER here to attend!

Password needed to access booking details. Please check your emails and spam folders.

Registration closes Friday 20th September 2024 - don't miss out.

Attending

The cost of attending this event is significantly subsidised by the charity. This allows us to offer you a valuable experience at a minimal personal cost to you. However, this also means that we must commit funds in advance to cover expenses such as venue, materials, and catering.

Given this financial commitment, we kindly ask that if you sign up to attend, please make every effort to join us. Should circumstances change and you find yourself unable to attend, we request that you inform us as soon as possible. This helps us manage our resources effectively and ensures that the funds can be redirected to other critical areas of our work, rather than being wasted on unused reservations.

Thank you for your understanding and cooperation. We look forward to seeing you at the Ichthyosis Event for Patients and Families and continuing our important work together.

This is a fabulous opportunity to meet and learn from experts and peers alike, enriching your understanding and management of ichthyosis. Don’t miss this rare event—register now and join us for a day of learning, connection, and fun!

Private event

Our event is a private event to protect the privacy of our ichthyosis community, ensuring it is a safe and supportive space. This approach allows individuals directly affected by ichthyosis to feel comfortable, included, and part of a community that truly understands their experiences. By maintaining this focused environment, we foster open discussions and meaningful connections, providing the best possible support for our members. You will need a password to register for the event. This information will be provided in the email or information sent by us or from your dermatology department. Please check your spam and junk folders!

Check your spam email box! If you are unsure please email us at [email protected]

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