Please join us for the 2014 Member Meeting/Conference.  This year's conference will be held July 5, 2014 in St. Louis, Missouri. We will be staying at  the conveniently located Hilton St. Louis Airport hotel, adjacent to Lambert St. Louis International Airport (STL).  The organization has been given a group rate of $99.00/night. These rates will apply for the dates of: July 2, 2014 – July 8, 2014. Visit the hotel's website at  and take a look around.  A link will be provided here on our website, where you may make your reservations with the hotel.

Prof. Dr. Suzanne Pasmans, professor of pediatric dermatology from the Rotterdam area, Netherlands will be joining us this year.  She will provide free medical evaluations; in addition, she will give a presentation during the general session covering the development of the Dutch SkinHouse as well as conducting a question and answer session.

Brandy James MA, MS will join us again this year.  Brandy is the State Director PHF Disability Program and Coordinator NIA Association in Clarksville, TN.  Her presentation will be an informative element to our conference as she shares a presentation regarding psychological issues, familial issues related to rare syndromes.  She will also be meeting with families privately following their evaluation with the doctor.

We will be offering an entertainment space for our children again this year.  And to ease the concerns of our parents, this space will be just as last year, within our general meeting room.  We will utilize a partitioning wall to give separation, yet allowing parents to monitor their children as well.

We also would like to plan a trip to the Magic House for our family day event on July 4th.  We are in hopes everyone will take the opportunity to come together as a family and join in the fun.

Annual membership fees are required for conference participation.


Register for meeting here