Rare Disease Day – Feb. 28, 2019

Over 7,000 Rare Diseases
Affect over 600,000 MILLION People World wide

Have a Rare Disease

1 in 10

Worldwide

Affects Children

1 in 2

Half of all diagnoses

Rare Diseases Affect more people than Cancer and AIDS Worldwide.

Chances are, you know several people with a rare disease, or who love someone with one.

Share images, Follow Hashtags, & Learn the Stories of those impacted by rare diseases

And if you didn’t already, you know my family now. My husband and all three boys share one rare disorder, called Axenfield-Rieger Syndrome. My youngest also has another rare disease called Miller-Deiker Syndrome.

Advocacy is a shared opportunity to help others understand the impact all Rare families face.

Rare Disease Advocacy Takes Many Forms

But it all starts with learning more.

The following websites are amazing resources for those who want to learn more, join in advocacy efforts (for Rare Disease Day or every day), or find out about a specific rare disorder.

Are you a parent or caregiver and want to learn more? Are you overwhelmed or need help navigating this new diagnosis? Please don’t hesitate to reach out to me on social media and I will be happy to personally help connect you with the appropriate resources (see bottom of page for links).

Global Genes
Global Genes

Worldwide rare disease resource with general information on identified rare diseases.

Official Site
Official Site

Worldwide site coordinating Rare Disease Day.

National Organization for Rare Diseases
National Organization for Rare Diseases

Find information on identified rare disorders.