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Expanding our PURA World

August 29, 2018

Dear fellow PURA families:

 

While the blessings of my life have allowed me to travel to many places and experience many cultures, I have failed in learning the languages of the places I have been and loved to visit.  The spoken language of each country, and cultures, represents a deep and sacred history of a land and its people.  I am struck at how much people love their native languages, and how much it represents them in the larger world. 

 

Part of our mission is to support families

As such, to help them understand more about PURA syndrome,  we are best able to support them in their native languages.

 

This year the Foundation has endeavored to better support our families across the globe.  I am happy to announce that we have recently expanded our services to you, our PURA family.  Some of you may already have noted that we have started to publish translated material regarding PURA on our website.

 

Whilst we have started with some of the basic information about the Foundation and the Global Research Network, we have also included information describing PURA syndrome and some of its features.  This information is meant to be a resource for you, our families, as well as for your medical team as a foundation of knowledge.  

 

So far we have translated into the languages we have the most family members speaking: Dutch, German, Spanish, Portuguese and Danish.  We are working to finalize Italian and French.  Each of these have been professionally translated by a consulting company, and reviewed by a member of the Global Research Network or clinical affiliate in their native language.  You can access the information on our website here: purasyndrome.org/resources

 

We sincerely hope that these expanded resources will help you, give you more information, and support you in your understanding of PURA syndrome.  Obviously, with over 24 languages spoken, this does not cover all of us yet, but we are making progress.  While we know that we will never be able to translate all of the information available, we will continue to review and work on adding to resources available for you.  If there are specific languages you feel we need to add, please let us know that too!  

 

I'm always happy to hear from you!

D

Dominic 

President

d.spadafore@pura-syndrome.org

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The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis , management, and health . Information about PURA and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication , some facts may change later .