Graves Disease (we have topics on January thyroid disease awareness month) Infective Endocarditis (we have topics on Infective Endocarditis and Infective Endocarditis and Blindness Raynaud’s Disease (we have a topic on Raynaud’s Disease Awareness) Rare Diseases is something that is within our family. Unfortunately within many families worldwide……
Please see Rare Disease Day 2022 which covers:
- Illustrative examples/quotes: Rare Disease Day 2022
- Rare Disease Day 2022 video
- Rare Disease Day 2022
- Our Final Thoughts/YouTube Video
© Copyright 2019 Grief Probate Journey Blog *PLEASE NOTE THIS INFORMATION IS SOURCED FROM UK and AMERICAN WEBSITES* It is also based on our own experience. *We are not experts in this field, we are speaking purely on our own experience with information sought from the internet to give further examples. *
Rare Diseases is something that is within our family. It is also unfortunately within many families worldwide. Listed above are a few of the conditions that are within our family.
My sister and I believe awareness and knowledge is power. For these reasons we will always continue our story, and new things that we discover on our continued journey.
A saying we often say to my nephews is: “sharing is caring”. In the world and times, we have been living through over the past three years, sharing of any kind can make the biggest and huge difference to a person’s day, week, or even state of mind.
Mental health and the health of our body are all connected so trying our best to be aware and take care of ourselves and our wellbeing is all important. For all of these reasons, we did not hesitate to do this as a topic again this year.
Please see Rare Disease Day 2022:
2. Illustrative examples/quotes: Rare Disease Day 2022
3. Rare Disease Day 2022 video
“This video kicks off the international patient-led campaign and shines a light on the diverse community of over 300 million people living with a rare disease”.
“Rare Disease Day 2022 shines a light on the global and diverse community of over 300 million people living with a rare disease and their families”.
“By telling the stories of real people all around the world who are living with a rare disease, this video hopes to show that while each rare disease is rare, as a community we share a lot”.
“Every year this global, patient-led awareness campaign brings together millions worldwide in solidarity with the rare disease community. In 2021, thousands of events took place in over 100 countries, mobilising people living with a rare disease and their families, healthcare professionals, policy and decision makers, and industry and company representatives. We hope that this will grow even more in 2022”!
“This video is translated in over 40 languages and disseminated globally by the 67 National Alliance patient organisation partners of Rare Disease Day”.
“Share it today!
“Read our stories”: https://www.rarediseaseday.org/heroes/
“Find events happening near you”: https://www.rarediseaseday.org/catego…
#RareDiseaseDay is organised by EURORDIS-Rare Diseases Europe and 67 National alliance partners”.
“We would like to thank all of this year’s rare disease heroes for their participation in the campaign”: Nada, Vasco, Tsepiso Gloria, Wafic, Jelena and Taka.
4. Rare Disease Day 2022
This year’s theme is “Share Your Colors.” Those who attended the webinar said they were hoping to influence policies that can reduce the time it takes to get diagnosed; improve access to therapies and care; increase R&D; improve equity; and reduce stigmatization for people who live with more than 7,000 rare diseases”.
“Wear That You Care”
“The Blue Denim Genes Ribbon is a symbol of hope for more than 7,000 small rare disease communities around the world. Wear your denim ribbon to show your support on World Rare Disease Day”.
Five rare diseases you never knew existed
- “Stoneman Syndrome. Frequency: one in two million people”. …
- “Alice In Wonderland Syndrome (AIWS) Frequency: currently unknown”..
- “Hutchinson-Gilford Progeria Syndrome (HGPS) Frequency: one in four million”. …
- “Alkaptonuria”. …
- “Chronic Focal Encephalitis (Rasmussen’s Encephalitis)” (13 Mar 2020)
“On 28 February 2022, the rare disease community is coming together for Rare Disease Day to spread hope and solidarity across the world with a… Continue reading” …
“It’s a day to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally! The National Organization for Rare Disorders (NORD)”…
“This February 28 is Rare Disease Day. With so many things going on in the world around us, it’s very easy to put off important things like health. That’s why”…
5. Our Final Thoughts/YouTube Video
We hope this topic might be of use.
Blessings: Grief Probate Journey