Defying Rare

Defying Rare is a non-profit organization that delivers Golden Gifts to local hospitalized pediatric patients that have a rare disease or disorder.

01/01/2023

Happy New Year from the Defying Rare team!

12/08/2022

What is rare? In the USA, a disease is generally considered rare when it affects less than 200,000 people at any given time.

12/05/2022

Why are Golden Gifts so important? Imagine being a child with a rare disease. You have to go to the doctor - if not multiple doctors - frequently, yet you're still not well. The unexpected gift of a Golden Gift can help give a child comfort and calm some of the anxiousness that a child feels when they are in the hospital or at an appointment, as well as on days when they feel isolated by the disease.

Donate to Defying Rare's Golden Gift program to help a child with a rare disease today.

12/02/2022

Did you know there are 7,000 rare diseases in the world? In the U.S. a disease is considered rare if it affects less than 200,000 people. Due to the nature of rare diseases and potential isolation within a certain population, there may be other rare diseases that haven’t been discovered yet.

Source: www.yourdna.com

11/30/2022

With just a few hours left to donate this , we want to take a moment to thank you for everything you’ve done to help us deliver Golden Gifts to the children we serve. We are so grateful for your support of our mission. 💙

11/29/2022

It’s ! Be a hero in the life of a child with a rare disease. We are grateful to everyone who chooses to support Defying Rare’s Golden Gifts program.

Link in bio to learn more and donate or visit: http://www.defyingrare.org

11/28/2022

Yep, it’s Monday! But, we’re so excited for tomorrow, !

Defying Rare is asking you to mark your calendars and support our mission on November 29th in the spirit of Giving Tuesday. Every dollar counts!

Can you do us a HUGE favor? Share this post with your friends and encourage them to consider Defying Rare on .

11/25/2022

is November 29th! 💙

Help us raise funds to deliver a Golden Gift to a hospitalized child. Support children with a this .

Please donate today at www.defyingrare.org

Link in bio!

11/24/2022

We are so thankful for you! Happy Thanksgiving from Defying Rare!

11/23/2022

Meet Miles, a rare disease warrior.

Miles was born with osteogenesis imperfecta type 8, a form of osteogenesis imperfecta which is a connective tissue disorder characterized by low bone mass, bone fragility, and susceptibility to fractures after minimal trauma. Miles was born with over 10 fractures and his arms and legs are bowed and shorter than normal.

Miles is a true miracle as most pregnancies don’t make it to birth. When babies do make it, many require breathing or feeding support. Miles didn’t need either. This sweet little one just went through surgery last week on both femurs and tibias, and one humerus, which gives his parents hope for continued growth and strength.

Miles is a strong resilient little bundle of joy! 💙

Thank you for sharing your story.

# OI

11/22/2022

Did you know that 50% of people suffering from rare diseases are children? For most, there are years of constant testing, hoping, and waiting for a diagnosis. Do you know a child who is suffering from rare disease?

11/17/2022

Children with a rare disease or chronic illness can feel isolated. The presence of a therapy dog can help reduce these feelings, helping them relate to others in a better way. At Defying Rare, we are working to increase access to therapy dogs for children suffering from rare diseases through our therapy dog program.

Address

220 S. Main Street
Royal Oak, MI
48067

Telephone

+12489466357

Website

http://www.defyingrare.org/

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