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Discover the #WhoseVoice campaign!

Discover the #WhoseVoice campaign!

Delve into RareQoL and Rare Community Network founder Sondra Butterworth’s #WhoseVoice campaign. Sondra shared her motivation behind launching the campaign with us, and encourages everyone to get involved. Learn what the #WhoseVoice campaign seeks to address, and film your rare disease story for Rare Disease Day on the 28th February 2022!

Healx answers your questions!

Healx answers your questions!

Healx asked for your questions about the world of rare disease treatment development, and you delivered! View the answers to your questions now by members of the Healx team. Don’t worry if you missed the deadline for submitting questions. They are always there to help if there’s anything you want to know. Just get in touch with them via email or Twitter!

Isabela & Alice: Raising awareness of Infantile Neuroaxonal Dystrophy

Isabela & Alice: Raising awareness of Infantile Neuroaxonal Dystrophy

This week’s blog is written by Isabela Ribeiro, mother to three-year-old Alice who was diagnosed with Infantile Neuroaxonal Dystrophy (INAD). Isabela became a volunteer at the INADcure foundation after her daughter was diagnosed with the ultra-rare disease INAD. She has been raising awareness of this unknown rare condition ever since in Brazil and beyond. This is Isabela and Alice’s story!