Rare Disease Org.

NORD Foundation – May 2011

May 20, 2011 by admin

May 2011 ~ eNews NORD to Co-sponsor 1st Annual Rare Diseases/Orphan Products Summit NORD will co-sponsor the 1st Annual Rare Diseases/Orphan Products Summit on Oct 11-13, under the auspices of the Drug Information Association (DIA). Collaborating organizations include EURORDIS (the European Rare Disease Organization), FDA, NIH, and Duke Clinical Research Institute. In addition to plenary sessions with senior government, industry, and patient speakers, there will be three tracks at the … [Read more...]

Filed Under: Courtney's Story Tagged With: A Celebration of Women, advocacy, audiences, brain diseases, chronic sarcoidosis, Commissioner Margaret Hamburg, Congressional Caucus, corticobasal degeneration, Courtney' s Story, disease, education, eNews, enhanced collaboration, European Rare Disease Organization, EURORDIS, government., greater transparency, including medical professionals, industry, information, May 2011, MD, Medical Foods Equity Act, multiple system atrophy, NIH Chemical Genomics Center, NORD Foundation, PML., progressive supranuclear palsy, Rare Disease Org., Recent Drug Approvals, registration, Related Brain Diseases (CurePSP), science-based decision-making, Senator Bob Casey, Tammy Baldwin, viral disease, virus, WOMEN of ACTION™, women taking action, women.

NORD: March 2011 Report

March 31, 2011 by admin

March 2011 eNews NORD Welcomes Five New Board Members Five noted leaders in the rare disease community have been elected to the NORD Board of Directors. Details. NORD Forming Coalition on Medical Foods Issue At a conference hosted by NORD in Washington DC last month, approximately 80 patient advocates, physicians, genetic metabolic dietitians, and others agreed to form an ongoing coalition to address problems related to accessing the medical foods required for treatment of … [Read more...]

Filed Under: CONTRIBUTORS, Courtney's Story Tagged With: AIDS, Athletes Rare Disease Champion, Barrett’s Esophagus, Cancer Genome, Chief Scientific Officer (CSO), Courtney's Story, diabetes, heart disease, HIV, Jordan Culbreath, March 2011 Report, Medtronic Global Heroes program, MS, NORD, Phenylketonuria (PKU), PML., Princeton University Running Back, Rare Disease Org., Sage Bionetworks, TB, The Courtney Project, tuberous sclerosis complex, tuberous sclerosis complex (TSC), University of Minnesota Consortium, Vanderbilt-Ingram Cancer Center (VICC)

Courtney’s Story: Special Holiday Offer!

December 26, 2010 by admin

Courtney's Story: A Compelling True Story My Precious Baby Girl [Paperback] WOMAN of ACTION: Courtney Leigh Hewitt https://851.5b0.myftpupload.com/?p=16540 HOLIDAY OFFER not to be missed! Order NOW! CLICK HERE: Reginald Todd Hewitt … [Read more...]

Filed Under: Courtney's Story Tagged With: Courtney Leigh Hewitt, NORD, PML Courtney's Story, PML., Rare Disease Org., raredisease.org

NORD – December 2010

December 20, 2010 by admin

NORD e-News: December 2010 Edition Holiday Greetings to All! On behalf of the NORD staff, Board of Directors, and Medical Advisory Committee, we extend our best wishes to all for happy holidays and a wonderful New Year! NORD is blessed with a strong and supportive circle of members and friends. We look forward to working with all of you to make 2011 the best year ever for the patients and families who rely on us to promote awareness, innovative research, medical advances, and fair … [Read more...]

Filed Under: CA-- USES, Courtney's Story Tagged With: Courtney Leigh Hewitt, NORD, PML., Rare Disease Org., The Courtney Project

NORD: March 2011 Report

Courtney’s Story: Special Holiday Offer!

NORD – December 2010

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