Statistically speaking, I’m in the school run every morning; I’m in the queue waiting to grab a coffee; I’m out keeping active on a Thursday. Who I am? I am the 1 in 17 people in Ireland affected by a rare disease at some point in their lives1. I could be on my way to yet another hospital appointment or just back from a training session. I could be the parent of a child with a rare disease, learning to navigate the complexities of my child’s condition. Or I’ve just become a qualified nail technician, despite being ill and in pain. “I’m just like you, but I might need extra help once in a while”.
I might have cystinosis, hereditary angioedema, Ehlers-Danlos syndrome, or any one of a myriad of conditions you’ve probably not heard of. Don’t worry, hardly anybody’s heard of my condition. I might have a rare disease or one that is extraordinarily rare. Whilst my experience gets shared with my family and friends and people similar to me, it’s not been shared much beyond that. I want to raise awareness of rare diseases in Ireland and share my story with you.
I am Number 17 is a campaign to raise the voices of those living with a rare disease, brought to you by Takeda Products Ireland Ltd, Rare Diseases Ireland and Rare Ireland, and has the support of 16 patient organisations. Our goal is to increase the understanding of what it is like to live with a rare disease and show that rare isn’t always that rare.
Supporting to spread the word are #IAmNumber17 changemakers from across Ireland, each with their unique experience to share.
Helping spread the word are #IAmNumber17 changemakers from across Ireland, each with their unique experience to share.
Joanne
Meet Joanne, an activist for people with disabilities, a sports journalist and a motivational speaker. She is also one of seven living people born with Tetra-amelia syndrome, a disorder characterised by the absence of all four limbs.
Cian
Cian is a joyful four-year-old boy from Naas, Kildare, who lives with NARS1, an ultra-rare neurological condition only discovered in 2021.
Lucy
Lucy is a student living with Cystinosis, a rare metabolic disorder, but refuses to let it define her life.
Caroline
Caroline is a patient advocate and a special projects officer at Cystic Fibrosis Ireland (CFI).
Janet
Janet is an aspiring writer with a love for fiction and fantasy, who enjoys music and has a dream to pursue creative writing in college. She lives with Sickle Cell.
Karen
Introducing Karen, a dedicated broadcast journalist and founder of her own business, The Treasure Vox. Karen lives with Immune Thrombocytopenic Purpura (ITP), a rare blood disorder.
Alanna
Alanna is a Changemaker from Westmeath who is turning her rare disease into a platform for awareness and understanding. Alanna was diagnosed with Koolen de Vries syndrome at 10 and a half.
Anna and Fiona
Meet Anna, an inspiring 4-year-old, living in Roscommon with her mother Fiona. Anna is not just any child; she is a Changemaker, bravely living with a range of rare heart defects.
Ciara
Meet Ciara, from Clare. Ciara are lives with Ehlers Danlos Syndrome (EDS) – a rare condition that affects collagen, the 'glue' holding the body together.
Anne
Meet Anne, from Clare, mother to Ciara who is another one of our Changemakers. Anne lives with Ehlers Danlos Syndrome (EDS) – a rare condition that affects collagen, the 'glue' holding the body together.
Bettina
Meet Bettina, who is living with Hereditary Angioedema (HAE) in Malahide with her husband and her three sons. Bettina has never let her HAE hold her back from enjoying life and fulfilling her dreams.
Danny and Carol
Meet Danny, a music loving nine-year-old boy from Drangan, Co. Tipperary, with a love for music, dance, and putting on a show for his family.
Kasia and Niamh
Meet Niamh, a spirited three-year-old from Galway city, and her mother Kasia, a researcher and senior lecturer in Physiology.
Áine
Meet Áine a ‘warrior’ Changemaker from Waterford. As a person living with 22q11.2 deletion syndrome (22qDS), a genetic condition with a wide range of variable symptoms, Áine has faced numerous challenges.
The Martin Family
Meet the Martin family: Les, Lynda, Holly, Cathal and Ciarán. Their journey with a Rare Disease called Metachromatic Leukodystrophy (MLD) began when both boys Cathal and Ciarán were both diagnosed on the same day in 2017.
This campaign is funded and initiated by Takeda Products Ireland Ltd, in partnership with Rare Diseases Ireland and Rare Ireland.
This campaign has the support of the following organisations
