This week’s blog was written by Makenzie Cabrera, mom to Josiah J Cabrera who was born in March of 2021 and lives with the ultra-rare condition, Familial Cold Autoinflammatory Syndrome. Makenzie shares her family’s rare journey with Josiah!
John Muller, Founder of GettingUp.org shares his personal experience of being diagnosed with inclusion body myositis for this week’s blog. Read his story!
This week’s blog was written by Laura Hattersley, Founder and Director of the CASK Research Foundation. Laura picked up the baton for her daughter Sarah and other CASK warriors by founding the UK rare disease organisation CASK Research Foundation in January 2022. Her organisation is passionate about helping to find treatments for CASK gene mutations. Read Laura’s rare journey.
This week’s blog is written by Rebecca Middleton, Founder of the rare disease patient group, Hereditary Brain Aneurysm Support (HBA Support). HBA Support was founded in September 2022 in response to Rebecca’s personal rare journey. Rebecca shares her story and how HBA Support came into existence.
Stephanie Ernst, Founder of TAPS Support, shares how her twin girls were diagnosed with twin to twin transfusion syndrome (TTTS) and Twin Anemia Polycythemia Sequence (TAPS) – a rare disease affecting twins. Read her rare journey now.
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!