Celebrating Sixty with a Mission, Todd Hewitt

Turning sixty is the day which makes most people realize that they are inching closer towards retirement. This is why sixtieth birthdays are all about celebrating the beginning of the end of life’s hectic years. No one knows that better than Reginald Todd Hewitt, Founder and Executive Director of a not for profit organization established for one of his daughters whom he lost suddenly in 2009 of a rare viral disease called Progressive Multifocal Leukoencephalopathy (PML). At a time when … [Read more...]

Mother’s Day TCP‏

Happy Mother's Day our Dear beautiful Mother, Courtney Leigh Hewitt. We miss you, we love you, we feel your presence everywhere and today, although we can't embrace you, smell your perfume, we know you are always and forever here with us! What we are able to shower you with today are all the beautiful proclamations and awards given in your honor! Even after your death, your voice is synonymous and radiates around the world as people learn what a loving, caring and compassionate mother you … [Read more...]

NORD: 1st Annual U.S. Conference On Rare Diseases & Orphan Products‏

Stellar Lineup of Speakers Announced for U.S. Conference On Rare Diseases And Orphan Products Join all stakeholders – patient advocates, researchers, government, industry, investors – in this 1st Annual Summit featuring thought leaders and focusing on collaboration! You are invited to the 1st Annual U.S. Conference on Rare Diseases and Orphan Products to be hosted by the National Organization for Rare Disorders (NORD) and the Drug Information Association (DIA). Additional support … [Read more...]

PRESS RELEASE …based on a true life Courtney's Story!

    A Celebration of Women   is elated to announce to the Women of our World the following PRESS RELEASE. A Celebration of Women is a Global Women's Advocacy Foundation created to inspire all women to step up and Take Action! This is accomplished through a marketing model of ‘Celebrating the Lives’ of Women Leaders , our WOMEN of ACTION, that are trailblazing, in one way or another, our path in this new millennium, for the further establishment of Gender Equity and Women's- Human Rights! " * … [Read more...]

PRESS RELEASE …based on a true life Courtney’s Story!

    A Celebration of Women   is elated to announce to the Women of our World the following PRESS RELEASE. A Celebration of Women is a Global Women's Advocacy Foundation created to inspire all women to step up and Take Action! This is accomplished through a marketing model of ‘Celebrating the Lives’ of Women Leaders , our WOMEN of ACTION, that are trailblazing, in one way or another, our path in this new millennium, for the further establishment of Gender Equity and Women's- Human Rights! " * … [Read more...]

NORD – Newsletter @ April 2011

    Forward this to a friend April 2011 eNews New Consortium Promotes Global Approach to Rare Diseases NORD and other patient advocates participated in the recent launch in Washington, DC of a new international consortium to promote global collaboration on rare diseases and orphan products. The International Rare Disease Research Consortium (IRDiRC) has set some ambitious goals, including the development of 200 new rare disease treatments by the year 2020 and the … [Read more...]

NORD: March 2011 Report

    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...]

NORD – December 2010

    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...]

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