Rare Disease Day 2022
Rare Disease Day is on Monday 28th February 2022
Here are the latest news stories from Alex TLC and about topics we think you'll find useful.
Rare Disease Day is on Monday 28th February 2022
Adding Up What We Know: A Global Perspective on Fertility Treatment Add-Ons 26 January 2022, 5.30pm-7.30pm (GMT)
On our 7th Day of Christmas we learn all about Sofia, a 6 year old who was diagnosed with epilepsy and leukodystrophy in 2020. Sofia is a 6-year-old girl who developed typically and mostly on track except for a minor speech delay until 3.5 years old. Sofia had her first seizure a few months before her 4th birthday in 2019. Her seizure was a grand mal seizure and she had two more in the ambulance ride to the hospital. Because she had multiple seizures, she was diagnosed with epilepsy that year. We started her on a medication and assumed they would be controlled and she would carry on as a typical little girl to grow and develop “normally”. Unfortunately, that medication didn’t work which began a trial of several other medications and ultimately the addition of the medical ketogenic diet for epilepsy to get her seizures well controlled.
Remember to look after your mental health over the festive period…. Below are some tips from Alex TLC that we hope will help you to find ways to look after your mental wellbeing this Christmas.
On 16 December, the United Nations General Assembly adopted the first-ever Resolution on ‘Addressing the challenges of persons living with a rare disease and their families’. To find out more: https://www.eurordis.org/news/un-resolution-adopted Watch the official adoption: https://youtu.be/-v7ZovIcPTk
Rarely Heard by Findacure & Same But Different A rare disease podcast series that exists to share the stories, experiences, knowledge, insights and voices of those living with rare diseases. The debut season will be focusing on mental health.