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

Calling All Artist with Sickle Cell

Artist with Sickle Cell:

Here is an opportunity to show off your art talents. All sickle cell disease and sickle cell trait individuals, adults, children and families are invited to participate in the online art project.

The artSPEAKS Program is ready to go! We’re excited to start seeing artwork created by children and adults that allows them to share their feelings and thoughts on living with Sickle Cell. Below is a flyer that details the program.

This is an online program in which children with sickle cell and their families can create artwork and then upload it to our website. Each month several pieces of art will be chosen to highlight and the artists will receive a $25 savings bond as well as an invitation to an end of year celebration for all of the highlighted artists.

The art can be uploaded at any time — the “contest” will reset with a new theme each month. People can upload as many pieces of art as they want. Learn more and participate at: www.wepsicklecell.org.
For additional information, questions or inquiries about the art project, please send an email to: www.wepsicklecell.org

 

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National Health Priority: Sickle Cell Disease

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Description White House, Blue Sky.jpg en.wikipedia.org

09/10/2015

The White House

OFFICIAL WHITE HOUSE RESPONSE TO

Declare Sickle Cell Disease a national health priority and support legislation to expand and establish SCD programs.

A Response to Your Petition on Sickle Cell Disease
As you know, sickle cell disease (SCD) is a common inherited blood disorder that affects an estimated 90,000 to 100,000 Americans, and can lead to lifelong disabilities and reduced average life expectancy. The disease disproportionately affects people of color, and occurs among roughly one out of every 500 African American births and one out of every 36,000 Hispanic American births.

SCD is a major public health concern that warrants ongoing federal support, and is a priority for President Obama and his Administration.

That’s why the Department of Health and Human Services (HHS) is actively engaged in a number of efforts to help do the following:

Better identify individuals with SCD
Improve access to care
Gather data about best practices in order to improve treatment therapies
Raise awareness of SCD
Promote health education about SCD
Search for a cure through ongoing research efforts
HHS is developing Healthy People 2020 objectives to support SCD-related health promotion and disease intervention initiatives across the federal government. To evaluate progress in meeting these objectives and better inform future federally funded research and prevention efforts, the Department is developing a pilot national surveillance system to collect data to better understand characteristics of those affected by SCD, what complications these individuals are experiencing, and what gaps exist in meeting their health needs.

Through the Health Resources and Services Administration’s SCD Treatment and Newborn Screening Programs, HHS is also expanding access to care for individuals with SCD by increasing the number of providers treating patients with SCD who are knowledgeable about current treatment options and identifying those with the disease sooner so that they can begin receiving recommended treatments. HHS is also increasing patient education and outreach efforts for individuals with SCD or who are carriers of the sickle cell gene mutation to prevent infections and ensure needed medical care is received. You can read a recent report detailing these efforts here.

The Centers for Disease Control and Prevention (CDC) has additional materials to raise awareness of SCD among teachers, non-medical professionals, and other members of the general public — all of which you can find online here.

We’re also investing in critical research on SCD at institutions across the country. The National Institutes of Health (NIH) funds research focused on increasing the effective use of known SCD therapies, discovering new treatment options, ameliorating complications, and ultimately finding a cure. In September, NIH released the first systematic and evidence-based report to assist clinicians in delivering care to people living with SCD.

Finally, the CDC has an agency-wide working group to explore opportunities to address unmet needs in SCD research, surveillance, and health education. Through the efforts of this working group and consultation across agencies within HHS, the Department will consider other ways in which it can strengthen its current activities regarding SCD.

We still have much more work to do, but we will continue to make progress — not just to help the tens of thousands of Americans currently living with sickle cell disease, but to ensure that one day, we have a generation where the disease is only something that’s read about in history books.

Thank you for your adding your name to this petition, and for your involvement in the We the People platform.

Follow @WeThePeople on Twitter all day long for a series of Q+As with various Administration officials on the petition responses we released today.

Tell us what you think about this response and We the People.

https://www.whitehouse.gov/feedback-petitions

Support Your Community on World Sickle Cell Day

Message from CEO Clarissa Pearson

Help us raise money for the Northern Virginia Sickle cell community. World Sickle Day, June 19th. There is power in numbers, so please be a part of ours. Working together helps break the Sickle Cell Cycle.

fundly.com/world-sickle-cell-day

Sickle Cell Patients have to deal with stereotypes such as;
Being viewed as : poverty stricken, drug addicts and under-educated.$ world sickle cell day
We are raising money because it is our goal to provide treatment protocols for all sickle cell patients. The goal of the treatment protocol for each Sickle Cell patients is to ensure that their treatment is the same , each time they visit the hospital. When Doctors provide Sickle Cell Patients with the treatment that works best for them, it not lessens the pain but the amount of time a patient has to stay in the hospital.
Our goal,is to,one day have enough clients and money So,that we are able, to provide support groups inside the hospital, a Sickle Cell Advocate, sickle cell literature on each unit and lastly better training for Doctors and Nurses and the best way to treat start an open dialogue between medical staff and patients on working together to treat their painful crisis.
Sickle Cell Patients spend their lives fighting to survive and then having to fight those whose main goal is to help us to feel better.
The day will come when we are tired of fighting, who will advocate for us then?