EP 16: Champion of The Rare Disease Community

Like so many people that Annette Hines has met on her special needs journey, Julie Gortze has turned her struggle into her life’s work and a mission to help others.  Julie is the president and founder of Rare New England, an organization that provides support and resources for individuals and family members impacted by rare disease.

 

Julie has personal experience with a complex disease and has learned first-hand what patients and families must deal with while searching for a cause for symptoms. As a nurse, she also understands that in some cases, the average medical personnel do not have the familiarity or sufficient education for recognizing, diagnosing and treating a complex medical disorder.

 

Julie discusses with Annette her own personal experiences and challenges in getting an accurate diagnosis for herself as well as the amount of time it took.

 

Annette and Julie talk about how this is a real challenge for many out there still and what you can do to get the support you need for yourself and the entire family.

 

Julie talks about the need to join groups with like-minded individuals, connect with others in similar situations and get involved however you can to help others in need. Julie started her group with only twenty people who got together for dinner one night!

 

And Julie and Annette make it a point to be careful what information you get from searching the internet on rare diseases.

 

There is support out there and you can find out more about Rare New England and all their offerings at: http://www.rarenewengland.org/