Living Well Movement
Explore our Living Well posters!
We invited the rare disease community to develop posters that tell their story.
Living with Ectodermal Dysplasia” by William, aged 8
William shares how he lives well with Ectodermal Dysplasia (ED). From keeping cool and rollercoasters, to needing a great dentist.
Living Well with PKU” by Hannah, aged 13
Hannah shares what living well means to her as a young teenager with PKU (Phenylketonuria). From treatment through to understanding, community, and developing her cooking skills.
“Living Well with Severe Alopecia” by Lorna
Lorna shares the key things she needs to help her live well with her rare condition today, and what is still missing for her.
“What I need to live well with CSID (Congenital Sucrase-Isomaltase Deficiency)” by Sarah
Sarah’s poster shows all the things that help her live well today, from pets to family and favourite crafts against the backdrop of what is still missing or difficult to access.
What “Living Well with Creatine Transporter Deficiency (CTD)” means to Oscar, aged 5
Oscar and his mum share the different things he needs to live well, with some help from his 2-year old sister, Izabelle.
“Living Well with Benign Recurring Intrahepatic Cholestasis (BRIC)” by Sam.
Sam shares all the things he needs to live well with his rare condition, from practical support to his passions.
Living Well with Rare For Me, A Rare Patient, Carer, and Medic” by Katy
Katy shares the good, the bad, and what we can change from her unique perspective living with her own rare condition whilst supporting family members, and studying to become a doctor.
“Life with HFI” by Carolyn
Carolyn shares her experiences of life with HFI (Hereditary Fructose Intolerance), and the impact it has on her self image, to help you understand what she needs to live well with her rare condition.
“What do my family need for us to live well with Homocystinuria?” by Mohamad
Four members of Mohamad’s family live with Homocystinuria (HCU). He shares what living well with HCU means to them as a family.
What “Living Well with Argininosuccinic Aciduria (ASA)” means to Emily, aged 15
Emily and her mum share the key things that support Emily to live well and bring joy.
"This is Carlo” by Carlo
Carlo shares all the different things that are important to him that help him to live well. Carlo lives with the Urea Cycle Disorder Citrullinemia.
What “Living Well with MCADD” means to Enzo, aged 3
Enzo’s mum Alicia and his older sister Evelyn, aged 10, share what helps Enzo to live well at the moment with Medium-chain acyl-coenzyme A dehydrogenase deficiency. During the creation of this poster, Enzo had two separate hospital stays.
“Living with Noonan Syndrome” by Katie
In collaboration with the Noonan Syndrome Association UK, Katie shares her poster about life with Noonan Syndrome, including the necessary support needed and the challenges faced by the community.
