RARE MAMAS RISING- EPISODE 23

Modeling Rare Advocacy with Thalassemia Advocate & Rare Mama Maria Hadjidemetriou

Maria was born with a rare genetic blood disease called Thalassemia, also known as Cooley's Anemia. Since the age of two, Maria has received two pints of blood every fourteen days. Today, Maria is a mother, a real estate professional, and a fierce Thalassemia advocate speaking around the world and inspiring patients to live their best lives. Maria is a published author in the American Journal of Hematology and currently serves as an Executive Board Member for Cooley's Anemia Foundation and as an Expert Patient Advisor for The Thalassemia International Federation. Most recently, Maria partnered with the global iconic beauty brand Maybelline as a model in the "We Speak" campaign for Disability Month. Maria is a model advocate, and in this episode, she speaks with strength, passion, and faith. She gives valuable insights about growing up with a rare disorder, learning to champion your disease, and living life without limitations or boundaries. She passionately shares ideas on how we can encourage our rare children to do the same!

EPISODE HIGHLIGHTS

• Maria's childhood and growing up with a rare disease
• The wisdom Maria's mother passed along to her at a young age
• How Maria learned to love her disease
• Maria's goal of turning Thalassemia into a household name
• Maria's advocacy work and fighting for access and equality
• Maria's strong faith and God's hand in her life
• Maria's best advice for other rare mamas

LINKS & RESOURCES MENTIONED

Maria Hadjidemetriou

https://www.instagram.com/downtownmomnyc/

Cooley's Anemia Foundation

https://www.thalassemia.org/

Thalassemia International Federation

https://thalassaemia.org.cy/

American Journal of Hematology

https://onlinelibrary.wiley.com/

The Disorder Channel

https://www.thedisordercollection.com/

CONNECT WITH NIKKI

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[email protected]