Through the Lens: Capturing Rare Lives and the EURORDIS Photo Award

Dezembro 2023

The Black Pearl Awards, scheduled for 20 February 2024 in Brussels and online, will unveil the next winner of the EURORDIS Photo Award.

The Photo Award, with this year’s submissions open until 31 January 2024, is an annual competition attracting hundreds of entries globally from people touched by rare conditions.

These entries are shortlisted for the Photo Award by Marcus Bleasdale, a veteran photographer celebrated for his focus on advocacy and human rights, and whose own accolades include awards from UNICEF and Amnesty International.

Once Marcus shortlists five entries, online voting – which this year will commence on 7 February 2024 – determines three finalists, each of whom will receive a prize.

But our Photo Award is much more than a competition. The Photo Award is a platform for artistic expression, community connection, and a record of life with a rare disease, with entries exhibited in our online gallery each year.

We explore the photos and experiences of three past entrants, who share their stories and hopes for the future.

The story of a mountain climb

Isabelle Maupeu-Bros from France describes her daughter Jeanne, 14, who lives with the rare genetic disorder known as ALG11-CDG syndrome. “Her rare disease prevents her from verbally expressing feelings, hopes, fears, and pains,” Isabelle explains.

For Jeanne, a photograph is a means for people with ALG11-CDG to “express their aspirations and show they exist.”

A girl in a chair embarks up a mountain with a team of volunteers.

Thanks for lifting me to the top of the mountain!, Isabelle Maupeu-Bros, 2022 Photo Award Entry

Isabelle’s 2022 Photo Award submission features Jeanne on the slopes of La Rhune, a Basque mountain. Jeanne and those volunteers pictured undertook the climb to honour Haize, a boy with an undiagnosed condition who had sadly died before his tenth birthday. Jeanne and Haize met in a rehabilitation centre, leading to a strong bond between their families.

Jeanne’s 12km climb to the 905-metre summit, inspired by Haize’s love for long outings at La Rhune, relied on a joëlette – an all-terrain chair for people with disabilities. “Going to the top with a joëlette requires many people. It’s a challenging terrain,” Isabelle recounts. Reaching the summit was a shared victory, “united and shared amongst all friends and volunteers.”

Reflecting on the broader experiences faced by people with rare diseases, Isabelle notes the lack of diagnosis or prolonged diagnostic processes for many. Despite Jeanne’s diagnosis, her future remains uncertain: “There is no prognosis, natural history, expert, or treatment,” Isabelle laments. Yet, she is hopeful that sharing Jeanne’s story will help others with similar challenges.

The story of a young friendship

Photographer Conny Wenk’s 2023 Photo Award entry captures a tender moment between two young girls in wheelchairs, with their clasped hands symbolising friendship and joy amidst their shared experience with spinal muscular atrophy. The image reflects their connection, fostered at an annual German conference for spinal muscular atrophy.

Two young girls with spinal muscular atrophy, who each sit in a wheelchair, hold hands and laugh together, along a path and under the shade of a tree.

Best Friends Ever, Conny Wenk, 2023 Photo Award entry

Conny, moved by their bond, says, “These two girls are just some of the cutest. To see them so happy that they get to spend time together makes my heart skip a beat.” She annually photographs these two girls – Lilly and Isabella – at the conference to document their evolving friendship.

Conny’s foray into photography began 22 years ago following the birth of her daughter, Juliana, who has Down syndrome. “Her diagnosis shook the foundation of my world,” she admits. This personal journey led her to publish books combining photos and essays, revealing the lives of families affected by Down syndrome.

Conny views the EURORDIS Photo Award as the “perfect platform to not only shine a spotlight on heartfelt images, but also for raising awareness of rare diseases.” Her work exemplifies the power of photography to capture and communicate the nuances of life with rare conditions.

The story of a smile

Angelique’s photograph of her nine-year-old daughter, Maëlle, captures a moment of resilience amidst her battle with epidermolysis bullosa (EB), a genetic condition causing extremely fragile skin. Angelique’s 2023 Photo Award entry contrasts Maëlle’s smile with the pain of her condition.

Maëlle, living in France, faces daily challenges with EB. Angelique shares, “Right now, what’s very hard is that she has a lot of big, open wounds on her whole body, so every day it means we need to change all of her dressings. It’s around one hour and a half per day, and the disease remains very painful.” The daily care, including painful baths, reflects the relentless nature of EB and the helplessness felt by parents like Angelique.

A young girl, whose hands show skin vulnerabilities resulting from Epidermolysis Bullosa, gently smiles as she holds her head in her hands.

Smile to life, whatever the obstacles, Angélique Sauvestre, 2023 Photo Award entry

As President of DEBRA France, Angelique advocates for children with EB. She highlights the struggles families face, including lengthy travels for specialised care, hopes pinned on costly genetic therapies, and the emotional and physical toll of caregiving.

Through her photo, Angelique aims to raise awareness of EB, noting, “because we see quite well her hands in this picture.” She adds, “What we don’t see in the picture is that under the cloth, she is covered with dressings and with open wounds.” This hidden reality of EB is challenging to convey without overwhelming viewers.

Angelique believes the Photo Award is a valuable platform, stating, “it’s a good opportunity, because it shows that we don’t want to claim pity. We don’t want pity.” The Photo Award provides a means to communicate the complexities of living with a rare condition like EB, she claims, highlighting resilience without seeking sympathy.

Sharing your story

Do you, or does someone close to you, live with a rare disease? Do you want to make sure that the power of your experience is captured and shared with the broader rare disease community? Could you be the winner of our 2024 Photo Award?

Make sure to submit your entry to the 2024 EURORDIS Photo Award by 31 January 2024!

Julien Poulain, Communications Manager