2014 PML AWARENESS RUN & WALK – OCT 11 (Orlando)

Dear Friends and Supporters, Now in existence for over 5 years, The Courtney Project www.the-courtney-project.org continues to strive to expand its programs and offerings to the community. We hope that you will be able to take part in one or more of the many exciting events that we are offering this year and experience firsthand the pride we take in supporting our cause. It is our mission to increase global awareness of Progressive Multifocal Leukoencephalopathy (PML) a rare viral … [Read more...]

What to Know as You Welcome Home Your Adopted Child

In 2012, slightly more than 52,000 children were adopted out foster care in the U.S., according to the U.S. Department of Health and Human Services. Just under 9,000 children were adopted from foreign countries that same year. Over a third of children adopted internationally were between the ages of 1 and 2, while the average age for children in foster care was just over 9 years old. Whether you are adopting a child from the U.S., abroad or out of foster care, use the following as a guide for … [Read more...]

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...]

Women’s Health Issues – Gender-Responsive National HIV/AIDS Programming for U.S. Women and Girls

A 'just-released special supplement' to the journal Women’s Health Issues provides in-depth information about gender-specific health considerations of U.S. women and girls in the HIV/AIDS epidemic and recommendations for national strategic programmatic improvements to meet their needs. The supplement grew out of a June 2010 forum, Bringing Gender Home: Implementing Gender-Responsive HIV/AIDS Programming for U.S. Women and Girls, hosted by the U.S. Department of Health and Human Services … [Read more...]

NORD Foundation ~ October 2011

  October 2011 eNews Nearly 400 Participate in NORD Conference At the U.S. Conference on Rare Diseases and Orphan Products in Washington DC Oct. 11-13, NORD released a major new study documenting flexibility in the Food and Drug Administration (FDA) review of potential treatments for patients with rare diseases.  The study examined the approval of 135 non-cancer orphan drugs since 1983.  Read the report and NORD’s press release. Speakers Include NIH Director, Social … [Read more...]

Jennie Anderson, AIDS.gov ~ 30 Years of AIDS Video, NIH’s Dr. Anthony Fauci

This has been a big year for the HIV community. One key event was June 5 — which marked 30 years since the first reported cases of AIDS in the United States. As one of the many efforts to recognize this important milestone, the U.S. Department of Health and Human Services (HHS) developed a series of videos featuring interviews with various federal and community HIV leaders. Highlights from each of the videos were used to create a compilation video, 30 Years of HIV in the US, which premiered at … [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...]

World Hepatitis Day 2011 – Whitehouse commemorates first Official Day!

Celebrating the FIRST INTERNATIONAL 'World Hepatitis Day' , this 2011, July 28th.   Today, I was honored to participate in a special White House event to commemorate the first official World Hepatitis Day. This event was one of many held across the United States and around the world for communities to join together and focus attention on the global health threat of viral hepatitis and promote actions to confront it. Worldwide, one in twelve persons are estimated to be living with … [Read more...]

HIV+ Nepalese women suffer “layers of discrimination”

In the AIDS epidemic in Nepal, the most-at-risk populations are female sex workers, injecting drug users, migrants and men who have sex with men. In 1988, Nepal launched the first National AIDS Prevention and Control Programme. This programme, known as the Short-Term Plan for AIDS Prevention and Control, formed the basis for the First Medium Term Plan 1990-92. This programme was externally reviewed in December 1992 and on the basis of the recommendations made during the review, the Second … [Read more...]

HRSA Guide for HIV/AIDS Clinical Care

HRSA Guide for HIV/AIDS Clinical Care Thanks to advances in detection and treatment, more people are living longer with HIV – but with increased life expectancy comes more complex care. In light of rapidly changing conditions in HIV care, HRSA’s HIV/AIDS Bureau has developed the Guide for HIV/AIDS Clinical Care, a comprehensive roadmap for physicians, nurse-practitioners, dentists, and other clinicians on how best to manage the long-term care of patients. The newly-released volume … [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...]

Courtney’s Story – 2nd Anniversary of her Death.

    ~~ Courtney's Story ~~ 2nd Anniversary of her Death.     Today is the 2nd anniversary of Courtney's death and as I expected I felt drawn to ride out the night until 8:18 a m this morning sitting by her bed as I did two years ago today.  The only difference today was, I wasn't holding her hand, but her heart in mine. It was hard to send the kids off to school today, but Courtney would not have had it any other way. I pray somehow the powers above will allow all of this to come together … [Read more...]

Courtney's Story – 2nd Anniversary of her Death.

    ~~ Courtney's Story ~~ 2nd Anniversary of her Death.     Today is the 2nd anniversary of Courtney's death and as I expected I felt drawn to ride out the night until 8:18 a m this morning sitting by her bed as I did two years ago today.  The only difference today was, I wasn't holding her hand, but her heart in mine. It was hard to send the kids off to school today, but Courtney would not have had it any other way. I pray somehow the powers above will allow all of this to come together … [Read more...]

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