The StressLess Lifestyle28 Feb 2024

Ep. 53: RARE disease day- OUR story- Feb 29th!

Why is Rare Disease day important? Because when you're questioning yourself, your sanity, and wondering "why is this happening and what the heck can I do about it?" having support and answers is LIFESAVING.

More than answers to "what" and "why" is the "how" and for many people living with rare diseases the "how" is not easy to come by. There is not a cure for a lot of rare diseases so having a special day to point them out and advocate for them is a way to bring money into the research towards cures. It's a way to help people living with rare diseases get the help they need and to be able to live life just a little bit easier, a bit closer to how everyone else gets to live!

I share the 2 rare diseases (really 3 but one isn't that rare) that we have in our family *with permission from my kids* and how it affects their lives and why advocacy is important.

The links to oganizations mentioned in the podcast:

CURED Foundation: Eosinophilic Disease research fundraising and advocacy

National Organization for Rare Disorders: Information, news, events and support for those with rare diseases www.rarediseases.org

Genetic and Rare Disease information Center: find info on Idiopathic Juvenile Osteoporosis GARD: https://rarediseases.info.nih.gov/

The ADINA act: The Allergen Disclosure In Non-food Articles Act

Elija's Law mentioned : (not a rare disease but many rare diseases come with allergy-like presentations, like EOE is immune-mediated allergy) Elijah-Alavi Foundation®️Food Allergies & Asthma Education

Stay tuned for others as we head into an allergy info week too!

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