This week’s blog is written by Toni Abram, founder of The Information Point for Centronuclear and Myotubular Myopathy and The Big Sunflower Project. Toni shares her personal rare story with Centronuclear Myopathy and introduces us to The Big Sunflower Project. Learn how the Big Sunflower project started now!
This week’s blog was written by the wonderful Victoria Arreola, Founder and CEO of Strong and Rare Parenting. Victoria shares her personal Strong and Rare journey, how she took civic action, why she created her podcast and more. She leaves with a vital message that deserves your attention. Read now.
Dr. Álvaro Acosta-Serrano’s research team at the Liverpool School of Tropical Medicine (LSTM) is working to reduce mosquito populations using nitisinone! Learn more.
In honour of Rare Chromosome Disorder Awareness Day, Becky Tilley has kindly returned to our blog to share how her and her family’s rare chromosome condition, Koolen-de vries syndrome, has impacted her mental health. Read now and share!
Discover the Shine a Light on XLH Virtual Exhibition to see how Kyowa Kirin is raising awareness of the impact X-linked Hypophosphataemia (XLH) can have on all aspects of one’s life. Learn more and view the exhibition!