Rare Disease Day

Preview to topic:

When my sister and I became aware of this day, right away we knew we needed to make this a topic. This is what we are all about, sharing our story and trying to spread awareness of unknowns. The reason why this awareness day is so important to us is, and why we feel so passionate about it is because our Dad was diagnosed with a rare disease. Our Dad was hospitalised in September 2016, sadly passing away in March 2017. He was diagnosed with Infective Endocarditis, which is a serious life-threatening condition…..

Please see: Rare Disease Day which covers:

  1. Introduction
  2. Rare Disease Day Videos
  3. Illustrative Examples: Rare Disease Day
  4. Rare Disease Day
  5. Illustrative Examples: What is a Rare Disease
  6. What is a Rare Disease?
  7. 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. *

^Top

1. Introduction

When my sister and I became aware of this day, right away we knew we needed to make this a topic. This is what we are all about, sharing our story and trying to spread awareness of unknowns. The reason why this awareness day is so important to us is, and why we feel so passionate about it is because our Dad was diagnosed with a rare disease.

Our Dad was hospitalised in September 2016, sadly passing away in March 2017. He was diagnosed with Infective Endocarditis, which is a serious life-threatening condition. We had absolutely no idea what this was as we had never heard of it before. (We have a topic on Infective Endocarditis and Infective Endocarditis and Blindness). What is even more shocking, concerning and worrying about this rare disease is that it starts from your gums. We all know in life that hygiene is important, but to think that it is possible to get a life-threatening heart disease from your gums. It is quite hard to comprehend.

I myself at the age of 16 was diagnosed with Graves Disease. This came as a very big shock for two reasons: the name of the disease is frightening, I’d never heard of it before, but I had just been diagnosed with it. (We have a topic on January Thyroid Disease Awareness Month 2021)

Please see Rare Disease Day

^Top

2. Rare Disease Day Videos

2.1 #RareDiseaseDay

Rare Disease Day 2021 official video

Rare Disease Day 2021 – 6 continents, 6 portraits, 6 heroes, 6 lives.

28 February 2021 – Rare Disease Day shines a light on the global and diverse community of over 300 million people living with a rare disease and their families.

Rare is many. Rare is strong. Rare is proud.

This redefining of the word Rare, representing over 6000 rare diseases and 6 continents, is highlighted by the individual stories of people living with a rare disease. The video uses the first 6 individual and family stories of Harvey, Syafiq, Angelina, Tristan, Regina and Jon-Kristian who share their experiences, from across the globe, to show that while each rare diseases 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 300 million people living with a rare disease worldwide. In 2020, 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 2021!

This video is translated in over 30 languages and disseminated globally by the over 62 National Alliance patient organisation partners of Rare Disease Day.

Share it now!

— Read our stories: https://www.rarediseaseday.org/tell-y…

 Join our community: https://www.rarediseaseday.org/send-u…

See events happening near you: https://www.rarediseaseday.org/events…

#RareDiseaseDay​ is organised by EURORDIS-Rare Diseases Europe and 62 National alliances of patient organisations for rare diseases.

EURORDIS sends a special thank you to all of our rare disease heroes and their families for their participation in the campaign:

– Angelina, Australia, living with an X-linked intellectual disability, microcephaly with pontine and cerebellar hypoplasia (MICPCH)

– Regina, Brazil, is in remission from Leiomyosarcoma

– Zixuan, China, living with Mucopolysaccharidosis type 1 (MPS1)

– Shambhavi, India, living with Alagille syndrome

– Reza, Iran, living with Cystinosis

 – Nancy (mother) and Harvey, Kenya, living with Spinal muscular atrophy type 1 (SMA)

– Syafiq, Malaysia, living with Hypohidrotic ectodermal dysplasia (HED)

– Nitzia, Mexico, living with Turner’s disease

– Jan Helge (father) and Jon-Kristian, Norway, living with Osteogenesis imperfecta (OI)

– Tristan, USA, living with Sickle cell anemia

EURORDIS also thanks the following National alliance patient organisations: China Alliance for Rare Diseases (CHARD) Federación Mexicana de Enfermedades Raras (FEMEXER) Instituto Vidas Raras Malaysian Rare Disorders Society National Organization for Rare Disorders (NORD) Norwegian Federation of Organisations of Disabled People (FFO) Organisation for Rare Diseases India (ORDI) Rare Disease Foundation of Iran (RADOIR) Rare Disorders Kenya (RDK) Rare Voices Australia

2.2 10 Things You May Not Know About Rare Diseases

National Organization for Rare Disorders (NORD)

“Did you know that there are over 7,000 rare diseases? Or that 25- 30 million Americans live with a rare disease? These facts and more are available in this video. Spread the facts to raise awareness! Share this video and encourage others to do the same to raise awareness for rare diseases”.

2.3 10 Tips for Newly Diagnosed Rare Disease Patients and Families

National Organization for Rare Disorders (NORD)

“NORD’s latest addition to its patient and caregiver resource center is this video providing tips for newly diagnosed patients and their families. The video includes further information on recommendations including giving yourself time to adjust, connecting with others and learning”.

^Top

3. Illustrative Examples: Rare Disease Day

^Top

4. Rare Disease Day

4.1 Rare Disease Day

“The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives”.

4.2 About Rare Disease Day

“Find out what Rare Disease Day is about”.

4.3 About the Day – Rare Disease Day – NORD (National Organisation for Rare Disorders)

Each year on the last day of February, the rare disease community comes together to raise awareness for”…

4.3 World for Rare Disease Day

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise”..

4.4 Rare Disease Day – Home | Facebook

Rare Disease Day 2021 is on February 28. See more. CommunitySee all. Highlights”…

4.5 Rare Disease Day (@rarediesaseday). Twitter

“This year’s #RareDiseaseDay will be more international than ever! Due to COVID-19 restrictions most of events will be ONLINE and people from anywhere in the globe will be able to attend! ”. #RareDiseaseDay

4.6 Rare Disease Day UK: Home

“Our work. We work on a variety of issues that families and individuals with genetic conditions face. We aim to provide information, support families and influence the services needed by these patients. We also work to add patient voice into debates that matter to our community”.

^Top

5. Illustrative Examples: Rare Disease

^Top

6. What is a Rare Disease

6.1 What is a Rare Disease?

There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world1,”

6.2 What is a Rare Disease UK?

“Introduction. A rare disease is defined as a condition which affects less than 1 in 2,000 people”. (9 Jan 2021).

6.3 What is considered a rare disease?

A rare disease is generally considered to be a disease that affects fewer than 200,000 people in the United States at any given time. There are more than 6,800 rare diseases. Altogether, rare diseases affect an estimated 25 million to 30 million Americans. (10 Jan 2020).

6.4 The UK Strategy for Rare Diseases – Gov.uk

“Research shows that 1 in 17 people will suffer from a rare disease at some point.1 In the UK, this means more than 3 million people will have a rare disease – so” …

6.5 List of Rare Disease Information – NORD (National Organisation for Rare Disorders)

“NORD’s Rare Disease Database provides brief introductions for patients and their families to more than 1200 rare diseases”.

6.6 What color do you wear for Rare Disease Day?

“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”.

6.7 Why is Rare Disease Day important?

“Rare Disease Day raises awareness for the 300 million people living with rare disease around the world and their families and carers”.

^Top

7. Our Final Thoughts/YouTube video

We cannot express enough or anymore how important we feel it is that this awareness day is acknowledged and spread as far and as wide as possible. Without our health, we really do not have much. Knowledge and Awareness really can make the biggest difference in many situations we face in life.

For my sister and I, we are passionate about sharing our story, helping to try and spread awareness, and trying our best to help and make a difference by what we are doing.

From something that started from our Dad’s gums he ended up being diagnosed with a life-threatening heart condition. Unfortunately, due to several misdiagnosis, it was not detected or diagnosed in time that the bacteria went into his eyes which caused him to go blind.

Knowledge and awareness can be the difference between such misdiagnosis, this is why we will always try our absolute best to shine light on causes like this.

We hope this might be of some use to whoever might read this.

As always, we would like to wish you a safe day, evening, and night.

^Top

3 thoughts on “Rare Disease Day

    1. Thank you so much for your encouraging supportive comment and feedback. We truly appreciate it. This means alot to us. We couldn’t agree more with you that it needs to be shared as far and as wide as possible.

      We hope we can help by continuing to contribute and share important matters such as this.

      Wishing you a great remainder of the week.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.