Sun-safe camp builds confidence in young patients with rare porphyrias

A specialized, sun-safe weekend camp helped children and young people with rare light-sensitive disorders safely experience the outdoors and connect with peers facing the same daily challenges, according to a recent study.

The Alfresco Residential camp, held at Thorpe Woodlands in Norfolk, U.K., in late 2024, gave young people with erythropoietic protoporphyria (EPP) or X-linked erythropoietic protoporphyria (XLP) a chance to try activities they normally have to avoid. Organized by the British Porphyria Association, “the camp provided a medically safe environment in which attendees could confidently engage in outdoor activities and develop meaningful peer connections,” researchers wrote.

The findings were based on surveys sent to families after the camp and published in the journal Molecular Genetics and Metabolism, under the title “Empowering children and young people with Erythropoietic Protoporphyria (EPP)/X-linked Erythropoietic Protoporphyria (XLP): Outcomes of attending a disease-specific residential camp.”

EPP and XLP are two types of porphyria that make the skin very sensitive to light. Exposure to sunlight triggers intense pain, swelling, burning sensations, and deep itching beneath the skin. Because standard sunscreens do not protect against this light-induced pain, many young patients isolate themselves indoors to prevent flares, making it hard to take part in normal childhood events or stay in touch with friends.

Overcoming isolation in a shaded setting

To give young patients an opportunity to socialize and play safely outside, organizers chose an adventure center nestled within dense, shaded woods. Activities were scheduled to avoid peak daylight. The weather was mostly cloudy and rainy on Saturday but bright and sunny on Sunday.

Trained support workers were on hand with medical safety plans to address a phototoxic reaction (a painful response to light exposure). Of the 52 attendees, 16 had a diagnosis of EPP or XLP. Following the trip, 13 people completed anonymous surveys, including five patients and eight parents or caregivers.

“Through careful site and activity selection alongside a trained support team and a provision plan in the event of a phototoxic reaction occurring, campers and their families were reassured of the environment being medically safe for individuals with EPP/XLP,” the researchers wrote.

Campers and parents reported high satisfaction. Parents and caregivers rated the camp an average of 4.89 out of 5, while patients rated their overall experience 4.5 out of 5. The location, activity guides, and medical safety procedures all received top marks.

A major benefit was being able to participate in outdoor activities without the usual fear of sunlight. The experience also appeared to improve confidence, helping young patients feel more able to participate in activities they might otherwise avoid because of their disease.

Before the weekend began, half of the surveyed patients worried about feeling awkward or not knowing anyone. By the end of the trip, every patient rated peer bonding at either 4 or 5 out of 5. “It’s been really nice to meet other people with EPP who are my age that understand it the way that my friends just couldn’t quite understand it,” one camper shared.

Support and connection for caregivers

Parents and caregivers also benefited from meeting other families. The weekend gave them dedicated time to share practical tips, discuss daily symptom management, learn about scientific and treatment advances, and speak directly with staff during Q&A sessions. These informal conversations provided reassurance and helped families feel less alone in managing a rare illness.

Photos and video recordings from the weekend showed young participants playing games, taking part in group challenges, and engaging warmly with one another.

Survey respondents offered several practical suggestions for future retreats. Patients asked for more activity options, improved meals, and fewer cameras during events. Parents and caregivers suggested better sleeping arrangements and more organized opportunities for parents to meet and get to know one another. Most respondents preferred the camp to take place once a year.

“A disease-specific, sun-safe residential camp can effectively reduce barriers to outdoor participation for children and young people with EPP/XLP,” the researchers concluded. “These findings highlight the value of structured, condition-specific residential programmes in improving wellbeing and reducing isolation in this rare disease community.”