Today, 20 November 2024, marks the official launch of the Rare Disease Day 2025 global campaign, beginning the 100-day countdown to 28 February 2025.
This year’s campaign shines a spotlight on the power of resilience and connection, with a powerful video at its centre featuring the stories of four families from Australia, Rwanda, Bulgaria, and Argentina, impacted by rare cancer, rare metabolic, genetic, and neurological conditions.
Meet this year’s heroes:
Ava and Tammie (Australia)
Ava was born in November 2017, and just 16 days later, her mother, Tammie, received a life-changing call: Ava had been diagnosed with Maple Syrup Urine Disease (MSUD). This rare metabolic condition affects how her body processes protein, making a carefully managed diet essential to avoid harmful levels of leucine, which can damage the brain. With urgent medical help, Ava was stabilised, and Tammie’s family began navigating a new reality, one centred around daily monitoring and a strict regimen to keep Ava safe and healthy.
Life with MSUD has profoundly changed their family’s world. Early on, Tammie managed a rigorous schedule of feeds and medications every two hours, educating Ava’s siblings about her dietary needs and limiting outings to protect her health. Over time, Tammie found support in a community of other families on similar journeys, sharing experiences and advice. Today, Ava is a thriving little girl, and her journey is part of our Rare Disease Day 2025 global campaign, showcasing the strength and resilience of families like hers.
Manzi and Algas (Rwanda)
Nineteen years ago, Manzi Ndamukunze and his wife, Solange, learned their son, Algas, had Williams syndrome (WS), a rare genetic condition that can cause intellectual disability, unique personality traits, and heart issues. At just eight months old, Algas underwent his first heart surgery, beginning a journey that would shape their lives. Since then, he’s had three more heart surgeries, all essential to helping him live as fully as possible. This March, he marked his 20th birthday, a significant milestone for him and his family.
Inspired by their experience, Manzi and Solange founded Centre-Alliance in Kigali, Rwanda, to support other children with rare diseases. Centre-Alliance, which opened on Rare Disease Day in 2020, focuses on raising awareness, teaching life skills, and creating an inclusive environment for children with rare conditions.
Radost (Bulgaria)
Radost, whose name means “Joy” in Bulgarian, is a 16-year-old with a passion for dancing and a love for animals. In March 2023, Radost was diagnosed with metastatic Ewing Sarcoma after a four-month journey to find answers. Her diagnosis led her family to Istanbul, Turkey, where she began an intensive treatment regimen that included multiple rounds of chemotherapy, radiotherapy, and life-saving surgeries. This time away from home has been challenging, separating her from her father and sister, but Radost has shown remarkable strength throughout.
Despite her condition, Radost has continued to nurture her love for languages, excelling in English and French while pursuing her studies in commerce and banking at a vocational high school. She also cares for a kitten with paresis that she rescued four years ago, reflecting her compassionate spirit. Radost’s courage is an inspiration, reminding us of the strength found within rare disease communities.
Charo (Argentina)
Charo RodrÃguez is an 11-year-old from Buenos Aires, Argentina, who loves music and horseback riding. At the age of four, Charo was diagnosed with Syngap1, a rare neurological condition that affects cognitive development, behaviour, and causes epilepsy. She was the first person in Latin America to receive this diagnosis, paving the way for greater awareness in the region.
Charo communicates through an electronic device, demonstrating her determination to connect with the world around her. Inspired by her journey, her family established the Syngap1 Foundation in Argentina to support diagnosed families, promote research, and raise awareness about rare diseases.
Watch the official campaign video below:
The campaign video is available on Rare Disease Day social media platforms, including YouTube, with subtitles in over 50 languages to ensure accessibility for all.
Join us in spreading awareness and celebrating the strength of the rare disease community.
Watch the video, share their stories, and help us make Rare Disease Day 2025 the most impactful yet.