Posted by: seattledizzygroup | February 29, 2020

Rare Diseases Are Not So Rare

February 29th, 2020–the rarest day of the year–is Rare Disease Day!

An estimated 300 million people worldwide or about 5% of the world’s population are living with a rare disease.

The number impacted globally shows Rare Diseases are not so rare!

If you don’t have a rare disease, you might know someone who does.

Uncommon vestibular disorders such as MdDS are considered rare diseases.

What is Rare Disease Day?

Rare Disease Day is an international event that 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 and decision-makers about rare diseases and their impact on patients’ lives.

Building awareness of rare diseases is so important because about 1 in 20 people will live with a rare disease at some point in their life.

Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

The message for Rare Disease Day 2020 is:
Rare is many worldwide.
Rare is strong every day.
Rare is proud everywhere.

Article: What Is a Rare Disease?

Video: 10 Things You May Not Know About Rare Diseases

To learn more about rare diseases or find out how you can get involved and help raise awareness, visit: www.rarediseaseday.org

Misconceptions about Living with a Rare Disease

It’s sometimes hard for others to grasp what it really means to live with a rare condition, or care for someone who’s rare.

The Mighty teamed up with the National Organization for Rare Disorders (NORD), a non-profit organization supporting individuals and families facing rare conditions through education, patient advocacy and research, and asked their communities, “What’s one misconception about living with a rare condition?” Their answers show that indeed, there are many who think it’s a much easier path than it is. The struggle to receive access to treatment and care, as well as a knowledgeable medical team is very real.

Article:  25 Misconceptions about Living with a Rare Disease

 

See also:

Be A Chronic Illness Ally

 

© Copyright 2020, Seattle Dizzy Group. All rights reserved.


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