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February 28th is Rare Disease Day

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Rare Disease Day is an international annual campaign to raise awareness among the general public regarding the world’s rarest diseases and how they impact patients’ lives. According to www.rarediseaseday.org, Rare Disease Day “is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.”

 

 

 

IVUmed volunteer physicians and nurses often assist in the treatment of especially difficult or rare cases while training and serving in low-resource environments worldwide. One disease that is extremely rare in the United States but seen more often in tropical climates is lymphatic filariasis (LF), commonly known as elephantiasis, a painful and disfiguring disease. LF is most often acquired in childhood, though its visible manifestations occur later in life, causing temporary or permanent disability.

 

 

Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008 and has since hosted over 1000 events worldwide, with over 70 countries participating in the 2013 events. Check out the 2014 Rare Disease Day events list here for awareness events in your area.

 

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Ghana Opens World’s First FGM Reconstructive Hospital

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According to the online news source GhanaWeb, the world’s first hospital dedicated specifically to reconstructive surgery for women who have suffered Female Genital Mutilation (FGM) is opening next week in Bobo-Dioulasso, Burkina Faso, Ghana.

 

The hospital is called “Kamkaso,” meaning “the house for women,” and was funded by donation from worldwide volunteers and philanthropists totaling $400,000. It will open in  on March 7, 2014 and will serve West Africa.

 

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At Kamkaso, experts will “perform clitoral surgeries and also train interested surgeons to restore FGM victims to sexual and self-dignity”.  Communications Director Nadine Gary stated, “We hope the hospital will serve as humanitarian pilot project for other parts of Africa and it’s likely to be replicated in other parts of Africa”.

 

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An IVUmed pediatric urology team will be training Ghanian doctors and nurses and providing patient care in Kumasi, Ghana from March 1-9. We look forward to working with and training Ghanian medical providers during this trip and in the future, supporting Ghana’s efforts to improve surgical care for the children, women, and men of their beautiful nation.

 

To read more about Kamkaso Hospital, go here.

 

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Dr. Robert Edelstein: Friend of Haiti

Dr. Robert Edelstein first traveled to Haiti for humanitarian service after the catastrophic 7.0 earthquake in 2010. However, his commitment to helping improve medical training and patient care in Haiti was not satisfied through a single visit. He has just returned from his fourth IVUmed surgical workshop in Deschapelles, Haiti, working with fellow IVUmed volunteers to build sustainable urology capacity there. 

  Dr. Edelstein answered a few questions regarding his experiences volunteering with IVUmed and his insights on the benefits of educational and humanitarian medical service for the givers and receivers:

 

1. What has kept you inspired to volunteer in Haiti and work with IVUmed?  I first went to Haiti after the earthquake in 2010, because I felt a very strong need to help out in any way that I could.  I really didn’t know what to expect, but it ended up being a very productive trip.  While there, I felt that I had to return. The need for urologic services in Haiti is profound, and the strength and resourcefulness of the Haitian people is very inspiring. I had always wanted to work with IVU due to its experience, urologic focus, and commitment to teaching, and I have been lucky enough to do so in the years since.

2.  What have been the most challenging and most rewarding aspects of your IVUmed service so far?  The most rewarding aspect to me is having the opportunity to work with Haitian health care professionals. The trip gives an excellent opportunity to learn from each other’s experiences. There are many challenges, of course, but finding solutions together can be a great part of the experience. 

3.  What insights can you share with other medical professionals considering working with IVUmed or other humanitarian organizations?  The opportunity to serve outside of the United States is a uniquely challenging and deeply satisfying experience. Many of the things that we take for granted daily don’t exist in rural Haiti, and often new ways must be found to solve problems using the local resources. The depth of knowledge and resources that IVU has to work with is inspiring and reassuring on these trips.

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IVUmed is committed to making quality urological care available to people worldwide.