April 22, 2018

February 28 to be Designated as Rare Disease Day in Old Saybrook

On Friday, Feb. 25 at 10 a.m. the Board of Selectmen of Old Saybrook will be holding a special meeting in the Town Hall, at which time they will be issuing an important proclamation.

The Proclamation by the Selectmen will designate Monday, Feb. 28 as Rare Disease Day to bring attention to the plight of people struggling with rare diseases in Old Saybrook and to raise awareness about these often undiagnosed or misdiagnosed diseases. 

A rare disease is one that affects fewer than 200,000 Americans.  There are nearly 7,000 such diseases affecting nearly 30 million Americans.  In this effort, the Town will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing World Rare Disease Day.  On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as an important global public health concern. 

Speakers at the Old Saybrook Selectmen’s meeting will include:

  • Resident Eileen Radziunas, who has written a book about her years of misdiagnosis with Behcet’s Disease
  • Residents Mark and Kristin Leopoldino whose daughter Avery (2) was diagnosed with CDKL5 and suffers daily seizures without a cure in sight.  Avery is the only child in Connecticut with this diagnosis although there are likely others who remain undiagnosed or misdiagnosed.  Details of a fund raiser to help this little girl will also be announced on Friday. 
  • Social Services Coordinator Susan Consoli, LPC who will be bringing attention to Celiac Disease, of which she was recently diagnosed after years of misdiagnosis.  Currently it is estimated that 1 in 200 people have Celiac Disease while only 1 in 2000 are diagnosed with this auto-immune disease.
  • Also attending will be Youth and Family Services Director Heather McNeil, LMFT, LADC who is the Town appointed Americans with Disability Act Coordinator.

For more information about the Special Meeting, please contact Susan Consoli at 860-395-3188 or via email at sconsoli@town.old-saybrook.ct.us.

For more background information about Rare Disease Day please visit the Rare Disease Day 2011 website at http://www.rarediseaseday.org  and the frequently asked questions section of the US Rare Disease Day website: at
http://rarediseaseday.us/wp-content/uploads/2011/02/RDD-Press-Kit-2011-FAQs.doc

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