The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond.

Hundreds of people from more than 30 different countries around the world submitted a photo for this year's contest, each reflecting the drive of people living with a rare disease worldwide.

From all who have entered, the five finalists below have been selected by the award-winning photographer Marcus Bleasdale.

You can now VOTE FOR YOUR FAVOURITE PHOTO! The winners will be announced on the night of the EURORDIS Black Pearl Awards, on 24th February 2021. The three finalists with the most votes will each receive a Prize.




Living With A Rare Disease

Disease: Alternating Hemiplegia of Childhood

Caption: Documentary photographer Díana Júlíusdóttir captures moments in the life of a family living with a rare disease, Alternating Hemiplegia of Childhood. Read more

Diana captured these images during the years 2017-2019. Sunna Valdís Sigurðardóttir is the only one diagnosed with AHC in Iceland but the odds of having a mutation in the gene ATP1A3 that causes the disorder is one in a million. The photos capture the suffering and anxiety of Sunna’s caretakers. The disease is episodic and the episodes can strike like a lightning without any premonition. These episodes can be extremely painful when all the muscles of the body cramp at the same time.

Photographer: Díana Júlíusdóttir

Country: Iceland

OI Can

Disease: Osteogenesis Imperfecta

Caption: My son Animesh, Osteogenesis Imperfecta, got a fracture in his femur and my wife took him to school in a stroller.

Photographer: Khim Bahadur Lamichhane

Country: Nepal

Our Routine 

Disease: KAND – KIF1A Mutation

Caption: We have to strap on TheraTogs everyday to help correct his gait… most days it’s a battle with lots of fighting and crying which ends with him just accepting he won’t win.

Photographer: Judy and Gavin Photography

Country: USA

Together Forever 

Disease: Proximal Spinal Muscular Atrophy Type 2

Caption: Our Wedding

Photographer: Pavol Kulkovský

Country: Slovakia

Having Fun With My New Balance Bike

Disease: Mucopolysaccharidosis Type 4A

Caption: Me having fun with my Balance Bike “Ferdinand” driving through water.

Photographer: Johannes Weigl

Country: Austria


Photo gallery 2021


Marcus Bleasdale

Marcus Bleasdale is a talented documentary photographer and photojournalist who has been dedicated to advocacy and human rights for over fifteen years. His work on human rights and conflict during his role as a photographer for National Geographic Magazine has helped to educate and advise corporations and policy makers around the world. Marcus has also partnered with various international advocacy groups, including the Human Rights Watch.

In 2002, his first book "One Hundred Years of Darkness" was published, soon followed by "The Rape of a Nation" (2009) and “The Unravelling” (2015). Appearing in the New Yorker, The New York Times, The Sunday Times Magazine and TIME Magazine to name a few, he has been the recipient of numerous prestigious awards including the UNICEF Photographer of the Year Award (2004), the Anthropographia Award for Photography and Human Rights (2010) and the Amnesty International Award (2015).


See other entries from the 2020 EURORDIS Photo Award