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June 22, 2015

TOPIC: Sticky Posts for Patient Organizations

Member Spotlight: UMDF

Posted at June 6, 2015 10:39 am by Lisa Sencen

 

The UMDF Mission is to promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.  To learn more about UMDF, please go to: www.umdf.org

1.)   What does it mean to you personally to be a patient organization serving the rare community?

  1. Fulfilling a necessary need to a group that… Read More

June 12, 2015

TOPIC: Sticky Posts for Patient Organizations, Patient Stories

Zan’s Journey: Diagnosed with SMS

Posted at June 6, 2015 02:50 pm by Lisa Sencen

When a psychiatrist diagnosed Robyn Fell’s toddler on the Autism spectrum, she was in shock.   “It’s not that I was in denial,” she explained, “my son, Zan, did have many unusual behaviors.”   A personality that included an insatiable obsession with certain toys, an inability to accept changes in routines and a gift for remembering names and events long after… Read More

May 13, 2015

TOPIC: Featured News, Medical, Patients & Members, Research, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families, Sticky Posts for Industry, Sticky Posts for Clinicians and Researchers, Sticky Posts for Advocate

2015 Rare Disease and Orphan Products Breakthrough Summit

Posted at May 5, 2015 08:00 am by Lisa Sencen

Save The Date for NORD’s Annual Rare Diseases and Orphan Products Breakthrough Summit – October 21-22, 2015 at the Crystal City Marriott in Arlington, VA.

This is the largest and most meaningful multi-stakeholder event of its kind – Historically featuring over 20 speakers from the FDA, participation from over 80 patient organizations and the Pharma/Biotech industry’s foremost experts in orphan product… Read More