Stand Strong With NORD in 2014!‏

Thank You for Helping NORD Drive Progress for All Who Live With Rare Diseases! 2013 marked our 30th Anniversary and brought many exciting milestones. With the help of our members, supporters and advocacy partners, NORD accomplished many objectives this year, including: Launched a web-based state insurance resource to provide state-specific information for patients and their families Connected hundreds of patients and caregivers with medical experts, researchers and advocates at … [Read more...]

NORD >>>> ADVOCACY ALERT

» » » ADVOCACY ALERT « « «   November 2012 Dear NORD Members and Friends: You have an opportunity today to do something incredibly important to promote the development of life-saving therapies for people with rare diseases. Congress has just returned from its post-election recess. Now our nation is in a countdown to devastating budget cuts that will go into effect for NIH, FDA and other government agencies on January 1 if Congress doesn't Take Action to resolve the budget … [Read more...]

WOMAN of ACTION™ – Courtney Leigh Hewitt

A Celebration of Women™ is honored to Celebrate the Life through this Tribute to a Caring, Compassionate, Courageous, Giving and Strong Woman! This Woman's dying wish was to share her Story so that as many people possible could be educated on the elusive traits of a disease named PML. The Courage and Strength that she maintained during her experience with this disease is an Inspiration to One & All. In the words of her Father: '...before Courtney lost her ability to speak, she asked me … [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...]

NORD e-News: July 2011 Edition

NORD e-News: July 2011 Edition Send a Message to Congress on NORD Website Federal budget cuts have been proposed to Medicare reimbursement for drugs and biologics as part of a compromise to raise the debt ceiling. One proposal under consideration is to move orphan products from Medicare Part B coverage to Part D. This could greatly increase the cost for some patients and families dependent on lifesaving orphan drugs and biologics. You can quickly and easily submit a message to President … [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...]

WORLD AUTISM DAY – April 2, 2011

    In a global observance, UN rallies support for people suffering from autism   People with autism need support early on in life. This appeal comes from United Nations Secretary-General, Ban Ki-moon, in his message on World Autism Day observed on 2 April.       The Secretary-General says that some people with autism suffer terrible discrimination, abuse and isolation and this violation of their human rights cannot be tolerated.  "We can support parents. We can create jobs for individuals … [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 February 2011 eNEWS

  Forward this to a friend February 2011 eNews Countdown Begins to Rare Disease Day 2011 Across the nation and around the world, the rare disease community is preparing for Rare Disease Day 2011. To show your support, click on the countdown device to get a version that you can post on your website or blog. If you haven’t done so lately, be sure to visit the U.S. Rare Disease Day website and the global Rare Disease Day site to see what’s happening in the U.S. and around the … [Read more...]

Courtney’s Story: Special Holiday Offer!

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

NORD September 2010 – The Courtney Project Supports

      September 2010 eNews House Passes Improving Access to Clinical Trials Act In a victory for rare disease patients and families, the U.S. House of Representatives on Sept. 23 passed the Improving Access to Clinical Trials Act (I-ACT). The legislation, which had been passed a few weeks earlier by the Senate, now goes to the White House where President Obama is expected to sign it. “This legislation will support the development of new therapies by removing a barrier that … [Read more...]

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