Wednesday Feb 15, 2023
EP15: Rare Disease Day Events and Celine Dion’s Ultra-Rare Diagnosis with Guest Lauren McDermott
On this episode of Signalise: a Dazzle4Rare podcast, we’re helping you get ready for Rare Disease Day 2023 with events, news, and guest Lauren McDermott.
According to RareDiseaseDay.org, you can contribute to this global action and awareness day are, “By Sharing your colours via social media, events, illuminating buildings, monuments and homes, by sharing experiences online and with friends, by calling on policy makers and shining the light on people living with a rare disease, collectively we aim to change and improve lives of the 300 million people worldwide.”
We recommend reaching out to your local representative this day. You can find links to representatives and members of parliament below for North America, the UK, and India.
USA - https://www.house.gov/representatives/find-your-representative
UK - https://members.parliament.uk/FindYourMP
Canada - https://www.ourcommons.ca/members/en
India - https://www.india.gov.in/my-government/whos-who/members-parliament
To find out more about the upcoming EDIRA conference, head to http://rareqol.co.uk or follow Dr. Sondra Butterworth via Linkedin.
Kerry Wong from the US Sarcoidosis community, among others, has big news to share with all our rare communities on her Twitter or Facebook page on the 28th in time for RDD 2023.
For all the awareness days mentioned in this episode, head over to the Rare Disease Awareness Days calendar. For the events, head to the Community Events calendar. Both are available on iOS, Android, and most devices in your calendar application.
As many of you will already have heard, beloved French Canadian singer Celine Dion announced her rare disease diagnosis in December 2022. Stiff Person Syndrome (SPS) patient and "Lone Wolf" advocate Lauren McDermott joins us to talk about her atypical SPS diagnosis.
To learn more about SPS, you can find detailed information on the National Institutes of Health website.
Look for a bonus episode later with Lauren where we casually chat about her diagnosis and her journey with SPS.
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