World Sickle Cell Day

Awareness and action will change a curative into a cure!

ANNOUNCING that the "World Sickle Cell Federation, Inc." in the works and our website is underway!!!

  

There is nothing more worthy

than a community banding together

and advocating for their own cause!

Welcome

 

Thank you for visiting our World Sickle Cell Day (WSCD) website. 

This website is created to encourage Global 'World Sickle Cell Day' Cell-a-brations, then share the information, activities, and concerns.

 

Find us on FB: https://www.facebook.com/groups/187334817994265

 

To learn more about Sickle Cell Anemia/Disease/Trait, Bone Marrow/Stem Cell and Cord Blood Donations, and how you can help those diagnosed, please visit :

aablooddriveandmarrowregistry4sicklecellawareness.webs.com

 

To know more about Juneteenth: njof.org

 

Feel free to email me, Nita T. at:  AA4SCDAwareness@aol.com

 

Please help us to continue to help our SC Community!!! 

ALWAYS remember: This is a "WE" thing NOT a "ME" thing!!!

 

Nita Thompson, Chair

African American Blood Drive and Bone Marrow Registry for Sickle Cell Disease Awareness

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     Edwige Ebaskisse is who I respectfully refer to as: “The Mother of WSCD.”  She is the President of the Sickle Cell Disease International Organization (SCDIO) (www.drepanetworld.org) and the Directrice Générale of Emilie Health & Communication (www.emilie-health.com).

     Ms. Ebaskisse, along with many other people have worked tirelessly to make WORLD SICKLE CELL DAY happen!  Our Sickle Cell Community thanks each and every one them.

     I, Nita Thompson, consider myself, the “Paula Revere” or "Windy Chessel" of WSCD.  {Winwood Chessel (the black man) was one of the 4 men who rode to warn that "The British are coming!"}.  After Allen Platt from Emery sent out an email that there is a World Sickle Cell Day December 2008, and February 2009 no one addressed it, so I just did and continue to do all that I can do to let everyone know!!!

     We will continue to assist, by inviting our Sickle Cell Community to join in and share their individual WSCD activities, events, pictures, etc.

    * Feel free to obtain, share, and pass on any flyer by right clicking on the flyers to copy then paste or download the PDFs.

**Please let others know about this website, so they can share their information or benefit from the information.

 

We ask that you please email us yearly what you are doing, and your pictures,

so we can post it/them on this site and share it for all the world to see.

 

Thank you! 


A bit of factual information:

 

World Sickle Cell Day and Sickle Cell Disease Awareness Month are NOT the same.

World Sickle Cell Day is celebrated on June 19th of each year, is recognized globally and was created by the United Nations by resolution.  People will celebrate it on different days and in different ways, because the next time June 19th will be on a Saturday is in 2021!

In the United States, September is Sickle Cell Disease Awareness Month, however it's not recognized in every state, and is not recognized globally!  It is created by State representatives voting to recognize it in their individual state.

Both World Sickle Cell Day and Sickle Cell Disease Awareness Month are not recognized globally, yet!!!

Thus, our work continues . . . .

History of World Sickle Cell Day

Through advocacy of the Sickle Cell Disease International Organisation (SCDIO), the support of the Republic of Congo and the Republic of Senegal, and the commitment in the scientific world, the African Union (in 2005), the UNESCO (2005), WHO (2006), and the United Nations (2008) recognized sickle cell disease as a public health priority. The 19 of June, has been chosen to celebrate every year the World Sickle Cell Day in order to raise awareness of the disease in the world.

Important frameworks for cooperation and partnership, these recognitions should lead to more concrete actions and are to be supported by strengthened partnerships at national, regional and international levels.

Sickle Cell Disease (SCD) is the most frequent genetic disease worldwide. It is present on four continents: in sub-Saharan Africa and in the Maghrib, in Asia (Middle-East, Arabic peninsula, India), in the Americas, on the North (USA), centre (Guatemala, Caribbean islands), and on the South (Brazil,Surinam, Guiana), in Southern Europe (Southern Italy and Sicily, Greece, Turkey). It is estimated that 500.000 are born every year with this severe and invalidating condition and that 50% of them will die before the age of 5 years. Trans-continental, SCD is also trans-ethnic and affects black populations from African origin and Arabic, Indian and Caucasian populations from Southern Europe.

World Sickle Cell Day:   The UN Resolution

United Nations                                                                               A/63/L.63

______________________________________________________________________________________

General Assembly                              Distr.:Limited

                                                                         18 December 2008

                                                                          Original: English

______________________________________________________________________________________

Sixty-third session

Agenda item 155

Recognition of sickle-cell anaemia as a public health priority Angola, Austria, Belgium, Benin, Brazil, Cameroon, Cape Verde, Central African Republic, Comoros, Congo, Côte d’Ivoire, Democratic Republic of the Congo, Djibouti, France, Gabon, Ghana, Monaco, Senegal, Togo and Zambia: draft resolution

Recognition of sickle-cell anaemia as a public health problem

The General Assembly,

Recognizing the need to promote better physical and mental health, bearing in mind the Universal Declaration of Human Rights1 and other relevant human rights instruments,

Welcoming World Health Assembly resolution WHA59.20 of 27 May 2006 and resolution 33 C/22 of the General Conference of the United Nations Educational, Scientific and Cultural Organization of 19 October 2005, and taking note of decision AU/Dec.81 (V) adopted by the Assembly of the African Union at its fifth ordinary session, held in Sirte, Libyan Arab Jamahiriya on 5 July 2005,

Recognizing that sickle-cell anaemia is one of the world’s foremost genetic diseases, that it has severe physical, psychological and social consequences for those affected and their families, and that in its homozygote form it is one of the most lethal genetic diseases,

Aware of the need for greater international cooperation, including through partnerships, to facilitate access to education, management, surveillance and treatment for sickle-cell anaemia,

Recognizing that proper management of sickle-cell anaemia will contribute to an appreciable decrease in mortality from malaria and in the risk of HIV infection,

Recalling the Abuja Declaration to Roll Back Malaria in Africa of 25 April 2002 and the global Roll Back Malaria initiative,

Taking note of the reports of the first, second and third international congresses of the Sickle-Cell Disease International Organization, held in Paris on 25 and 26 January 2002, in Cotonou from 20 to 23 January 2004 and in Dakar from 22 to 24 November 2006, respectively, and the report of the first global consultations on sickle-cell anaemia, held in Brazzaville from 14 to 17 June 2005,

Recognizing that education, information and communication technologies should play a crucial role in preventing sickle-cell anaemia and that there is an urgent need to create effective research and training programmes in the countries most affected by this disease,

1.     Recognizes that sickle-cell anaemia is a public health problem;

2.     Underlines the need to raise public awareness about sickle-cell anaemia and to eliminate harmful prejudices associated with the disease;

3.     Urges Member States and the organizations of the United Nations system to raise awareness of sickle-cell anaemia on 19 June each year at the national and international levels;

4.    Encourages Member States, as well as United Nations agencies, funds and programmes, international institutions and development partners, to support health systems and primary health-care delivery, including efforts to improve the management of sickle-cell anaemia;

5.    Invites Member States, international organizations and civil society to support the efforts being made to combat sickle-cell anaemia, including as part of health-system strengthening efforts, in the various development programmes, and to encourage basic and applied research on the disease;

6.    Urges the Member States in which sickle-cell anaemia is a public health problem to establish national programmes and specialized centres for the treatment of sickle-cell anaemia and to facilitate access to treatment;

7.    Requests the Secretary-General to bring the present resolution to the attention of all Member States and organizations of the United Nations system.

__________________

1 Resolution 2/7 A (III).

2 See A/55/240/Add.1, annex.

The World Health Organization (WHO) and World Sickle Cell Day

June 19 World Sickle Cell Day

The World Health Organization (WHO) has started work to promote a world wide agenda to address hemoglobin dysfunctions.

WHO has made a commitment to:

·         Recognize that sickle cell disease is a major health issue.

·         Increase awareness of the world community regarding sickle cell disease.

·         Eliminate harmful and wrong prejudices associated with sickle cell disease.

·         Urges member countries where sickle cell disease is a public health problem to establish health programs at the national level and operate specialized centers for sickle cell disease and facilitate access to treatment.

·         Promote satisfactory access to medical services to people affected with sickle cell disease.

·         Provide technical support to all countries to prevent and manage sickle cell disease.

·         Promote and help research to improve the lives of people affected with sickle cell disease.

 

The World Sickle Cell day is celebrated across the globe with special emphasis in African Nations and Asia. The celebrations include a press, media campaigns, music shows, cultural activities, and talk shows.

The main emphasis is hence on educating medical professionals, care givers, and associated personnel about prevention, research, and resources to minimize the complications due to sickle cell disease. Hence June 19th is devoted mainly to spread awareness, through talks, seminars, pamphlets, literature and consultations.

Last updated September 17, 2017