World Sickle Cell Day 2017

World Sickle Cell Day is on 19th of June. Wearing  red for sickle cell day was established by the United Nations General Assembly in 2008, to raise awareness about the sickle cell disease globally. Sickle cell affects us all directly or indirectly and it has affected and continues to affect many families who have lost family members as a result of the condition. Contrary to common knowledge, people in other countries are also affected like India, Saudi Arabia, Turkey, Arabic Peninsula, Brazil, Surinam, Guiana, Southern Italy, Greece.  Studies have shown that Nigeria has the largest population of people with Sickle Cell Disease in the world, and with over 150,000 Nigerian babies born with sickle cell every year.
With proper care and treatment, persons with Sickle Cell can lead a relatively good quality life.
It is important that everyone knows their status before starting a family.

DC Diaper Bank

Donating to the DC Diaper Bank keeps bringing diapers to babies in need

The DC Diaper Bank provides diapers to social service organizations that are already helping families in need through comprehensive programs and services.  As of October 2015 there are 30 organizations in the Diaper Distribution Network and growing each month.  Collectively, the Distribution Network works to get an average of 100,000 diapers and other hygiene items to 3,200 families each month in Washington, DC, Maryland, and Virginia.

DC Diaper Bank has found that distributing diapers in this way ensures they reach those who need them most. It also provides partnering organizations a resource – diapers – they are not normally able to provide, increasing the services they can offer. By working with organizations that are already well established in the community and currently working with families in need, the DC Diaper Bank ensures that the diapers collected are distributed to infants and babies in the most efficient and timely manner. If you would like to learn more about becoming a Diaper Distribution Partner please contact info@dcdiaperbank.org

Programs

United to Conquer Sickle Cell Disease

Post from Sickle Cell Disease Coalition: http://www.scdcoalition.org/get-involved.html

Get Involved

People with sickle cell disease (SCD) are afflicted on two fronts – one by having a serious, chronic condition that inflicts pain and other complications – the other by a fragmented system of care.

Even though we know what causes SCD, there is only one approved treatment and no widely available cures. Individuals with SCD suffer from severe pain and infections with devastating complications such as brain injury, stroke, organ damage, and premature death. People with SCD are often unable to access quality care and the treatments they need.

The status quo is unacceptable, and we are setting out to change it.

Today, there are opportunities to transform this disease and the way we care for people with SCD. We are launching an international call to action on SCD by bringing together researchers, clinicians, individuals with SCD and their families, policymakers, and the private sector to focus our collective efforts and change the state of SCD around the world.

The time is now to change the course of this disease. Here’s how you can join us:

As an Organization

  1. Pledge to take on activities or programs that will move the needle on SCD. Advocacy organizations, government agencies, companies, policymakers, and foundations can contact us at coordinator@scdcoalition.org to share how they plan to help us transform SCD.

As an Individual

  1. Spread the word about the need to improve the state of SCD. Share our video and SCD fact images on social media. Use #conquerSCD to highlight our cause.
  2. Encourage your Member of Congress to join the Congressional Sickle Cell Disease Caucus.
  3. Read the report State of Sickle Cell Disease: 2016. This report was compiled by the American Society of Hematology based on the feedback of more than 100 thought leaders and has been endorsed by several organizations.

Living Well with Sickle Cell Conference

Sickle Cell Conferences and Events

The Sickle Cell Disease (SCD) Program at Children’s National invites you to the 7th Annual Family Education Symposium on “Living Well with Sickle Cell”.
Saturday, October 29, 2016 11:30 AM – 4:30 PM
Sheikh Zayed Campus for Advanced Children’s Medicine Children’s National Health System 111 Michigan Ave NW, 2nd Floor, Auditorium
Washington, DC, 20010
This year’s symposium will focus on helping patients and their families manage sickle cell disease while living life to the fullest.
http://childrensnational.org/news-and-events/event-calendar/community/7th-annual-family-education-symposium-updates-in-sickle-cell-disease

Advancing a National Agenda to Eliminate Disparities in Pain Care

In 2000, Congress passed the Minority Health and Health Disparities Research and Education Act (P.L. 106–525) establishing National Institutes of Health’s (NIH) National Center on Minority Health and Health Disparities (NCMHD; recently renamed as National Institute on Minority Health and Health Disparities, NIMHD) and charged the center with administering special grant programs focusing on disparities, coordinating minority health disparities research across NIH Institutes, and spearheading the development of an NIH-wide Strategic Plan on health disparities. This effort resulted in unprecedented developments, including 27 NIH Institutes and Centers developing individual strategic agendas to eliminate health disparities. Some of these agendas recognized the importance of disparities in pain care.

At about the same time, the 106th United States Congress passed Title VI, Section 1603, of H.R. 3244 declaring the era starting 2000 as the “Decade of Pain Control and Research”[1,2]. Subsequent high-profile pain initiatives included the Veterans Pain Care Act of 2008 (H.R. 6122), Military Pain Care Act of 2008 (H.R. 5465), and the National Pain Care Policy Act of 2009 (H.R. 756/S.660), provisions from which were included in the Affordable Care Act (ACA) signed in to law by President Obama in March 2010 [3]. These high-profile initiatives placed pain on the national agenda as a major public health problem—one with real social and fiscal consequences. The problem of pain cuts across disease entities and treatment settings. According to recent estimates, 116 million American adults suffer from chronic pain; pain remains the principal reason for which people seek medical care [4,5]. Chronic pain is strongly associated with societal costs measured in terms of disability, poor quality of life, relational problems, lost income and productivity, and higher health care utilization including longer hospital stay, emergency room visits, and unplanned clinic visits. The burden to Americans are reflected in an enormous annual expenditure that ranges $560–$635 billion in direct and indirect costs [5]—a marked increase from the previously estimated cost of $100 billion [6] and an estimated cost of employees’ chronic pain to businesses of $61 billion [7]. Despite chronic pain’s concerning socioeconomic impact, many aspects of pain care, training, and research remain grossly under-resourced [8,9]. Only less than 1% of the NIH research budget is invested in pain and symptom management research [10] (Box 1).

 Please click on link below for full article!

http://painmedicine.oxfordjournals.org/content/13/1/5