Today (28th February 2023) is Rare Disease Day. When my sister and I first became aware of this in 2021, right away we wanted to know more about it, and we knew it was something we would share and try our best to highlight further awareness. February is also Rare Disease Awareness Month. The reason why February was officially declared Rare Disease Month in 2008 is that February has the “rarest” number of days……..
Please see Rare Disease Day 28th February 2023 which covers:
- Introduction to the topic
- Rare Disease Day 2023
- National Organisation for Rare Disorders (NORD)
- Our final thoughts
- Our 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. *
1. Introduction to the topic
Today (28th February 2023) is Rare Disease Day. When my sister and I first became aware of this in 2021, right away we wanted to know more about it, and we knew it was something we would share and try our best to highlight further awareness.
February is also Rare Disease Awareness Month, but when searching for information to do a topic, we didn’t really find much. There was more information available for the day and so we went with this instead. The reason why February was officially declared Rare Disease Month in 2008 is that February has the “rarest” number of days.
My sister and I started our blog almost four years ago for various reasons, but one of them was to share the experience of our Dad being diagnosed with Infective Endocarditis which is a rare life-threatening heart condition. At that time, we had no idea what it was, the seriousness of it, and the impact it has depending on the severity and the stage it is detected. We have topics on Infective Endocarditis and Infective Endocarditis and Blindness.
I myself at the age of 16 was also diagnosed with a rare condition called Graves’ Disease. At that time, I was also on the borderline of suffering from Thyroid Eye Disease which is also a rare condition. Through medication management and surgeries, it didn’t fully develop into this.
We have topics on Thyroid Awareness:
We are also aware that unfortunately, we are not alone in this situation of a family member, or a person themself being diagnosed with a rare condition.
Sometimes in life, we can feel alone with the various things that happen on a daily basis. Our health is very important, both physically and mentally. Knowing there are people who could have a common understanding of some of the things you are going through, and that there are resources and people you can reach out to, can make such a big difference.
For all of these reasons, we felt it important to do this as a topic.
Please see Rare Disease Day 28th February 2023:
2. Rare Disease Awareness Day 2023
“28 February is Rare Disease Day”
“Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers”.
2.2 What is the rare disease theme for 2023?
“What’s the theme for Rare Disease Day 2023? This year we are encouraging you to use: Share your colours” and “Light up for Rare”.
2.3 How many people in the UK live with a rare disease?
“There are more than 7,000 rare diseases, affecting an estimated 3.5 million people in the UK. Their complex nature means it is difficult for healthcare professionals to receive training on every condition or for patients to access the relevant specialist”. (28 Feb 2022).
2.4 Why is Rare Disease Day important?
“ABOUT Rare Disease Day. 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) is proud to be the official US partner for Rare Disease Day”.
2.5 How do people get rare diseases?
“What causes rare diseases? The exact cause for many rare diseases remains unknown. Still, for a significant portion, the problem can be traced to mutations (changes) in a single gene. Such diseases are referred to as rare, genetic diseases”. (10 Jan 2020).
2.6 Can a rare disease be cured?
“While gene therapy holds great promise for the treatment of monogenic diseases in the future, efforts to find cures to date with traditional pharmaceuticals have resulted in treatments for only 5% of all rare diseases”. (13 Dec 2020).
2.7 Rare Disease Day 2023 Parliamentary receptions
(6 Jan 2023) — “This joint nation event is taking place on Thursday, 2 March 2023 and is an opportunity for people across the UK to come together to address the”…
2.8 What color do you wear for Rare Disease Day?
“The themes for Rare Disease Day 2023 are #ShowYourStripes and #ShareYourColours, giving the community a visible way to come together on February 28. Organizers recommend wearing your zebra stripes and lighting up homes and landmarks in the Rare Disease Day color palette” (blue, pink, green and purple). (4 Jan 2023).
2.9 Rare Disease Day 2023 – Awareness Days Events Calendar
“Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public”…
2.10 Rare Disease Day 2023: Bringing Awareness to Those Living
“19 Feb 2023 — In the United States, the National Organization for Rare Disorders (NORD) is proud to be the official US partner for Rare Disease Day”.
2.11 Rare Disease Day 2023 – Rare Disease UK
“RARE DISEASE DAY IS TAKING PLACE ON Tuesday 28 FEBRUARY 2023. Many rare conditions are lifelong and complex. As a result, people affected by rare conditions”…
2.12 Get involved this Rare Disease Day 2023
(16 Nov 2022) — “Rare Disease Day helps to raise awareness and generate change for the 300 million people worldwide living with a rare condition, their families”…
2.13 What illness has no cure?
“cancer. dementia, including Alzheimer’s disease. advanced lung, heart, kidney and liver disease. stroke and other neurological diseases, including motor neurone disease and multiple sclerosis”. (16 Apr 2018).
3. National Organisation for Rare Disorders (NORD)
3.1 National Organisation for Rare Disorders
“NORD is committed to the identification, treatment, and cure of rare diseases through programs of education, advocacy, research and patient services. Partner”…
3.2 What is the National Organisation for Rare Disorders UK?
“Rare Disease UK is the national campaign for people with rare diseases and all who support them. Rare Disease UK provides a united voice for the rare disease community by capturing the experiences of patients and families”.
4. Our final thoughts
We hope this topic might be of use to those who read it.
5. Our YouTube Video
Grief Probate Journey 