Rare Disease Day 2014

Rare Disease Day February 28, 2014

Here is a link for the US: http://rarediseaseday.us/

This event takes place on a global, national and local level. If there is nothing in your state take action now and tell your representatives that rare diseases are important to you. - See more at: http://rarediseaseday.us/#sthash.ivYDsApq.dpuf

There are national activities to participate in like Handprints Across America. 

Find a way to participate that is right for you, view suggested activities on website for:

• individuals
• organizations
• industry
• medical institutions and academic centers
• schools

- See more at: http://rarediseaseday.us/#sthash.OuwM9mbA.dpuf

Local for myself is Salt Lake City, Utah. This year is the first year that SLC will be participating in Rare Disease Day. If your state is not yet participating contact your representatives!

Rare Disease Day US in Salt Lake City on 2/28/14, Utah State Capitol, Hall of Governors, 3-5 pm

American MedChem Nonprofit Corporation (AMC) (http://americanmedchem.org; Twitter: @americanmedchem) joins the National Organization for Rare Disorders (NORD), http://rarediseaseday.us/; Twitter: @rarediseases ) to observe Rare Diseases Day US in Salt Lake City.

When: February 28, 2014, from 3:00 - 5:00 pm

Where: The Utah State Capitol, Hall of Governors

Short talks are planned at the same venue from 4:00 – 5:00 pm.  

This is the first time that Rare Disease Day US is being officially observed in SLC. Governor Herbert has proclaimed 2/28/14 as Rare Disease Day in Utah.

Speakers (subject to change):

Steve Mikita, JD

Utah Assistant Attorney General

Robert Selliah, PhD

Founder/President of AMC

Joe Cramer, MD

Pediatrician

Intermountain Primary Children’s Hospital

Mike Spigarelli, MD, PhD

Professor of Pediatrics, Internal Medicine and Pharmacy

University of Utah Health Sciences

All are invited to attend and show support to our local community of patients and families afflicted with rare diseases.  Also, lend your help to make this event be a success by sharing this information (email, social media, word-of-mouth, etc) with your friends and families and with patients with rare diseases. AMC and NORD will have a table of exhibits and information to raise awareness about rare diseases.

Robert Selliah, Ph.D.,

Founder, President & CEO

American MedChem Nonprofit Corporation

Salt Lake City, UT, USA

robert@americanmedchem.org 

http://americanmedchem.org

Twitter: @americanmedchem

DISCOVERING NEW MEDICINES TO TREAT KIDS