The CGD Society is delighted to be planning a CGD Community Weekend for individuals and families affected by Chronic Granulomatous Disorder (CGD). Taking place all day Saturday 31 October and Sunday morning 1 November 2026, the weekend will provide an opportunity to connect with others in the CGD community, hear from expert speakers, meet the CGD Society team, and enjoy a range of activities for both adults and children.
We welcome expressions of interest from members of the CGD community both within the UK and internationally. Accommodation on the night of 31 October, together with meals, refreshments and activities throughout the weekend, will be provided by the CGD Society at no cost to attendees. Whether you are newly diagnosed, have been part of the CGD community for many years, or are supporting a loved one affected by CGD, we hope this weekend will offer a welcoming space to learn, share experiences and build lasting connections.
As part of the planning process, members of the CGD Society team have visited the venue and are working alongside our Clinical Nurse Specialist, Helen, to ensure it is appropriate for individuals affected by CGD. We understand how important it is for families to feel comfortable and reassured, and we are carefully considering all aspects of the venue and programme to create a safe and welcoming environment for everyone attending.
Whether you’re attending for the first time or reconnecting with friends you’ve made through the CGD Society, we hope this weekend will strengthen our community and create lasting memories.
We are currently gathering expressions of interest to help us understand demand and plan the weekend. Further information can be found below, including details about the venue, accommodation, travel arrangements and how to register your interest.
Please note that completing the expression of interest form does not guarantee a place at the CGD Community Weekend. ALL DETAILS OF THE WEEKEND WE HAVE SO FAR ARE BELOW FOR CLARITY.
At a glance
Dates
- Saturday 31 October – Sunday 1 November 2026
What’s included
- Overnight accommodation on Saturday 31 October
- Meals and refreshments throughout the weekend
- Expert presentations and Q&A sessions
- Children’s activities
- Opportunities to meet and connect with other families and adults affected by CGD
- Time with the CGD Society team
Cost
Attendance, including accommodation on Saturday 31 October, meals and activities, is provided by the CGD Society at no cost to attendees.
Who is the CGD Community Weekend for?
The CGD Community Weekend is intended for people who are directly affected by CGD and their immediate families.
This includes:
- Adults living with CGD, together with their partner and dependent children (where applicable).
- Female X-linked carriers of CGD, together with their partner and dependent children (where applicable).
- Families with a child affected by CGD, including parents, siblings and dependent children.
- Individuals who have received a bone marrow transplant or gene therapy for CGD, together with their immediate family.
We recognise that many people continue to identify as part of the CGD community and would be very welcome to attend.
Our aim is to bring together as many members of the CGD community as possible. As places are limited, we have had to prioritise those most directly affected by CGD and their immediate families.
We recognise that some extended family members may also wish to attend. We are currently considering how best to accommodate these requests and will provide further information as plans develop.
Venue
Over The Wall Campus Ockbrook, Derby, United Kingdom >> Over The Wall Camp’s Future Home – Over The Wall Camp – A UK Children’s Charity
The venue has been selected to provide comfortable accommodation and facilities for families and adults attending the weekend. It offers meeting space for expert sessions together with indoor and outdoor areas for children’s activities and informal social time.
Further details, including directions and travel information, will be shared with attendees once places have been confirmed.
Accommodation
Accommodation on the night of Saturday 31 October is included.
Families and individuals will be allocated rooms based on the size of their party to ensure the available accommodation is used as effectively as possible.
If you are travelling a longer distance and wish to arrive on Friday 30 October, we will be happy to provide details of nearby accommodation. Please note that accommodation for the night before the event is not funded by the CGD Society.
Travel
Attendees are responsible for arranging and funding their own travel to and from the venue.
Further travel information will be provided closer to the event.
Please note that as the CGD Society is funding accommodation, meals and activities for attendees, we want to ensure that as many places as possible are used.
If you are offered a place, we will ask for a refundable £20 deposit per group to confirm your booking. The deposit will be returned after you have attended the weekend.
Further details about the deposit and refund process will be provided when registration opens.
Please note that submitting an expression of interest does not guarantee a place. If demand exceeds the available capacity, places will be allocated in line with these priorities.
EXPRESSION OF INTEREST CLOSES 14TH JULY 2026.
Frequently asked questions
Who can attend the CGD Community Weekend?
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The weekend is intended for people who are directly affected by CGD and their immediate families. This includes adults living with CGD, female X-linked carriers, families with a child affected by CGD, and individuals who have received a bone marrow transplant or gene therapy for CGD. Full eligibility information can be found in the Who is the CGD Community Weekend for? section above.
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Can people from outside the UK attend?
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Yes. We welcome expressions of interest from members of the CGD community living both within the UK and internationally.
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I have received a bone marrow transplant or gene therapy for CGD. Can I still attend?
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Absolutely. The CGD Community Weekend is open to people who have received a bone marrow transplant or gene therapy for CGD, together with their immediate families. We recognise that many individuals continue to identify as part of the CGD community and would be delighted to welcome you.
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Can I bring my partner?
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Yes. Partners are welcome to attend as part of your immediate family.
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Can siblings attend?
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Yes. Partners are welcome to attend as part of your immediate family.
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Can extended family members attend?
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Unfortunately, not. Due to the capacity of the venue and available accommodation, we are only able to accommodate those directly affected by CGD and their immediate families.
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I am the parent of an adult living with CGD. Can I attend?
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We recognise that many parents continue to play an important role in supporting their adult son or daughter. We are currently considering how best to accommodate these requests, such as a day pass, and will provide further information as plans develop.
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Is accommodation included?
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Yes. Accommodation on Saturday 31 October 2026 is included as part of the weekend.
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What if I need accommodation the night before?
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If you are travelling a longer distance and wish to arrive on Friday 30 October, we will be happy to provide information about nearby accommodation. Please note that accommodation for the night before the event is not funded by the CGD Society.
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Are meals included?
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Yes. Meals and refreshments throughout the weekend are included.
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Are travel costs included?
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No. Attendees are responsible for arranging and funding their own travel to and from the venue. However, limited travel support may be available in exceptional circumstances. If travel costs would prevent you from attending, please contact the CGD Society to discuss your situation in confidence.
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Will childcare be available?
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We are currently exploring childcare arrangements during the expert presentations. The information gathered through the Expression of Interest process will help us plan this provision.
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Why do I need to pay a refundable deposit?
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The CGD Society is funding accommodation, meals and activities for the weekend, and places are limited. If you are offered a place, we will ask for a refundable £20 deposit per family to confirm your booking. This helps us reduce last-minute cancellations and ensure that as many places as possible are used. Your deposit will be refunded after you have attended the weekend.
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Does completing the Expression of Interest form guarantee a place?
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No. Completing the form helps us understand demand and plan the weekend. If demand exceeds the available capacity, places will be allocated in line with the eligibility criteria outlined above.
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When will I know if I have been offered a place?
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Once the Expression of Interest period has closed, we will review responses and contact everyone who has registered their interest with the next steps.
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