Join Us in Scotland for a Unique Ichthyosis Event!

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.

When?

Saturday 14th September - 9.00am-5.00pm

Why Attend?

We're bringing expert knowledge and the ichthyosis community together in Scotland, creating a rare opportunity for you to access crucial information and support. How often do you get to meet and chat with someone else affected by ichthyosis? This event is not to be missed!

Members only

Our event is exclusively for members to protect the privacy of our participants, 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. As a valued member* of our support group you will be sent full event details, including the venue, via email. For security, and to ensure privacy, you will need a password to register for the event. This information will be provided in the email. Please check your spam and junk folders!

*members receive our emails and newsletter 

Become A Member here

Why Near Perth?

The venue for our event is located just 4 miles from Perth, Scotland, which is situated in the heart of Scotland and is super easy to reach by car, bus and train, avoiding expensive city centre parking and accommodation. We've also chosen to hold this event near Perth because it's close to PGL Dalguise, offering young people a fantastic chance to meet peers, build confidence, and enjoy activities with others who have ichthyosis.

Exciting Day for All Ages

Join us for a full day of activities

  • Adults and Parent Caregivers: Participate in group discussions focused on managing the physical and mental health impact of ichthyosis.
  • Children (8-16 years): Spend the day at PGL Dalguise, engaging in fun and confidence-building activities.
  • Younger Children: Enjoy onsite activities designed just for them.

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.
  • Stay updated with the latest research and insights from guest speakers.
  • Meet pharmaceutical companies, discuss products available and take away samples to try.
  • 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 (Collodion baby, Lamellar ichthyosis, Congenital Non Bullous Ichthyosiform Erythroderma, Harlequin ichthyosis, Bathing Suit ichthyosis), Epidermolytic ichthyosis (Bullous Ichthyosiform Erythroderma), Netherton syndrome plus others.

*will be determined by types of ichthyosis of those attending  

Inclusive Registration

Your event registration includes all activities, lunch, and refreshments for both adults and children. You must register to attend in advance.

What You'll Gain

  • Connect with others living with ichthyosis and share personal experiences.
  • Learn from knowledgeable healthcare professionals about ichthyosis, its genetics, and the latest research.
  • Gain insights and practical tips to better manage the condition.

Accommodation Options

There are many accommodation choices, both onsite and nearby, to suit all budgets.

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 conference 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!

Register and get tickets