Sickle Cell Disease Awareness

World Sickle Cell Day History and June 19, 09 Activities

This page includes:

I. The UN Resolution II. The Sickle Cell Disease International Organization Announcement III. What we will be doing Globally IV. More on what we will be doing in Los Angeles V. First Online World Sickle Cell Day Marrow Drive VI Some Suggested Activities

I. UN Resolution Making June 19 World Sickle Cell Day

United Nations A/63/L.63

______________________________________________________________________________________

GeneralAssembly 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.

II. Sickle Cell Disease International Organization

CELEBRATION OF THE FIRST SICKLE CELL

DISEASE WORLD DAY

UN, New York 19th June 2009

Contacts :

�� OILD/ SCDIO

21 rue Godefroy 92800 Puteaux FRANCE

Tel: 00 33 1 49 01 13 54/ 13 62 / 13 61

Fax:00 33 1 47 74 69 75

E-mail: info@drepanetworld.org

CONTEXT

On 22nd December, 2008, the United Nations General Assembly adopted Resolution

A/63/L63 that recognizes sickle cell disease as a public health problem.

Among the objectives of this resolution, initiated by SCDIO , proposed by the Delegation of the Republic of Congo Brazzaville and co-sponsored by 24 Member States, can appear in particular, the celebration on 19th June of each year (formerly celebrated by SCDIO since 19th June 20031), a World-Day of sickle cell disease devoted to awareness campaigns at national and international levels.

With this in mind, the Permanent Mission of Congo to the United Nations in New York in

collaboration with the International Organization for the Fight against Sickle cell disease

(OILD/SCDIO) organize this 19th June 2009, the first sickle cell disease awareness day at the UN headquarters, in partnership with the World Health Organization (WHO), the United Nations Children's Emergency Fund (UNICEF) and United Nations (UN).

MAIN ACTIVITIES

- Testimonies Stand exhibition by patients' associations and international NGOs

- Art Exhibition on the disease

- Panels of discussion and round table

- First Ladies meeting

- Gala dinner

DATE AND PLACE

19th June 2009 - United Nations Headquarters in New York

MAIN TOPIC

Almost a century of the discovery of sickle cell disease: review and perspectives.

Subtheme 1: General Presentation of the disease: from discovery to now

Video report on the sickle cell anaemia

19 June 2003 is the date of the international call of women against the disease organised by SCDIO in the office of UNESCO in Paris

.. Complete report on progress made, obstacles to universal access to prevention,
treatment, care, information and education;
.. Testimonies of a patient and a relative of patient

Subtheme 2: Correlation between the disease and other health priorities such as malaria and HIV/AIDS and malnutrition

Subtheme 3: How to decrease disparities between North and South in the treatment of sickle cell disease: Solutions for countries strongly affected by the disease

Subtheme 4: Effective strategies of fight: role of the sickle cell dedicated centers and research

Subtheme 5: Effective strategies for resources mobilization and financing programs.
.. Case of the United Nations’ System
.. Awareness through sport and culture.
.. Others

Round Table:
(Topics to be defined by NGOs like SCDAA/SCTPN and scientists from the SCDIO)

PROGRAM
.. Monday 15th to Friday 19th June 2009:
Art Exhibition on sickle cell disease

.. Thursday 18 June 2009
Press conference at the UN headquarters

.. Friday, 19 June 2009:
09h00-09h45: Opening Ceremony
09h45-10h15: Visit of the exhibition stands
10h15-12h45: Communications by scientific experts followed by discussions
12h45-13h15: Presentation of the conclusions of the panel and closing ceremony.
13h15-14h30: Lunch
15h00-16h30: Round Table Meeting of First Ladies and Royal Highnesses
18h00-21h00: Gala Dinner

III World Sickle Cell Day Global Activities

CELEBRATION OF THE FIRST SICKLE CELL DISEASE WORLD DAY 19th June 2009

AT the United Nations

The Permanent Mission of Congo to the United Nations in New York in

collaboration with the International Organization for the Fight against

Sickle cell disease (OILD/SCDIO) organize this 19th June 2009, the

first sickle cell disease awareness day at the UN headquarters, in

partnership with the World Health Organization (WHO), the United

Nations Children's Emergency Fund (UNICEF) and United Nations (UN).

MAIN ACTIVITIES

1. Testimonies Stand exhibition by patients' associations and

international NGOs

2.  Art Exhibition on the disease

3.  Panels of discussion and round table

4.  First Ladies meeting

Edwige Ebakisse-Badassou, Présidente de l'OILD/SCDIO

21 rue Godefroy, 92800 Puteaux

Tel   33 1 49 01 13 54, Fax: 33 1 47 74 69 75

edwige.badasso@wanadoo.fr     http://www.drepanetworld.org/

. . . . . . . .

New York, NY

We in New York Are going to work with our patients support Groups

particularly with the Groups from SCTPN and Q SCAN.

The SCTPN is organizing a Sickle Cell World Day (WSCD) Festival at Dagg

Hammarskjold Plaza, a public park across the street from the UN.

The festival will feature food/non-food vending, performances and

presentations.  Novartis, the NY Blood Center, DOH and 5 hospitals will

table.  Novartis is bringing in Ruben Studdard.  We will work to enlist

the other NY-based entertainers and athletes to participate as well.

Small presentations or press conferences promoting sickle cell trait

awareness are manageable and can be coordinated rather quickly.

If you have any easy ideas that we can share with our community

collaborators or if you have contact with foreign physicians, community

organizations or diplomats, please contact me so we can discuss how to

rally their support for WSCD.

Thank you, Teresa “Ginger” Davis, Director, Outreach & Development

Sickle Cell/Thalassemia Patients Network in New York (SCTPN)

www.sctpn.org  Email: sctpn4scd@aol.com    877-812-4216 Tel/Fax

SCTPN & SCAN WSCD New York Festival

 . . . . . . . .

Oklahoma, OK

Supporters of Families with Sickle Cell Disease, Inc Tulsa, Oklahoma a

family /community driven organization that works with both cities

Oklahoma and Tulsa.  For World Sickle Cell Day our group is

coordinating a citywide blood drive, a commemorative balloon release

program, and a gospel concert.  Our theme is World Sickle Cell Day:

Awareness, Education & Hope.  Velvet is requesting names of persons

diagnosed with SCD who have passed for acknowledgement during reading.

Email her at: swithsicklecell@yahoo.com.

. . . . . . . .

Nigeria

We at CarDan Sickle Cell Centre have put our program as follows:

On Thursday, June 18 2009, there would be a Road Walk, to sensitize the

people on the recognition of Sickle Cell Disease in our community; this

will be covered by the various media and newsagents.

On Friday, June 19 2009, two events will take place

1. A Music Concert, which will involve well-known Nigerian musicians,

comedians and other local artist that will help us on the day and beyond.

2. A Sickle Cell seminar for patients and their families will take

place in the morning to highlight ‘Sickle Cell  Disease is not a

taboo’

On the Sunday, June 21 2009 a Thanksgiving Mass will take place at The

Assumpta Cathedral, Owerri. Imo State Nigeria.

SUMMARY OF PROGRAM FOR WSCD FROM CARDAN SICKLE CELL CENTER OWERRI IMO

STATE NIGERIA

1.  April-June 2009, 10.00 am,  Radio Announcements,  Heartland Fm

100.5 Owerri, Imo State Nigeria and Imo.

2.  April-June 20097.00 pm, Announcements on Nigerian Television,

Broadcasting Corporation, Owerri Imo State, Nigeria. Nigerian

     Televison Authority (NTA) and other TV Stations in Nigeria

3. 18/06/2009, 10.00 am, Road Walk, Going around the town, creating

awareness and talking to the public about Sickle Cell Disease

4.  19/06/2008, 10.00 am, United Nations World Sickle Cell Day (WSCD),

Seminar and Music Concert

5. 20/06/2009, 10.00 am, Outreach in Rural Areas, Visiting three (3)

villages to create awareness on Sickle Cell Disease

6. 21/06/2009, 10.00 am, Thanksgiving Mass at Assumpta Cathedral,

Owerri, Imo State, Nigeria. Conducted by officiating Priests

. . . . . . . .

England/UK

In the UK our program will be more of an Information day and Outreach

in various strategic parts of London.

. . . . . . . .

UNITED KINGDOM

Just to inform you that the following book will be published this year

on UN Sickle Cell Day:  Sickle Cell and Deaths in Custody by Simon

Dyson and Gwyneth Boswell

http://www.amazon.co.uk/Sickle-Deaths-Custody-Simon-

Dyson/dp/1861771150/ref=sr_1_1?ie=UTF8&s=books&qid=1241508562&sr=1-1

There will also be a conference on June 10^th

http://www.dmu.ac.uk/partnerships/consultancy/innovation_centre/dmccc/c

onferences/sickle-cell/

. . . . . . . .

Netherlands & Europe

Oscar Netherlands: We have 15 different countries involved.  I have

patients from, Afghanistan, Bulgaria, France, Germany, Turkey,

Morocco.  We are having several parent groups plan drives, walks, etc.

I will forward you all of their information later.

. . . . . . . .

Uganda

I intend to start an awareness campaign with Rotary clubs.

. . . . . . . .

Dayton, OH

The Dayton Sickle Cell Affected Families are always ready to support and

promote any awareness for the cause of sickle cell disease and other blood

disorders. We remain true to the objectives of our organization. When

any call come out, be it, Advocacy Day on Capital Hill, World Sickle Cell

Day, Advocacy Day at the State House, which we will do on June the 3rd,

while our legislators are in session. We attempt to create awareness all

year round through health fairs, public service announcements.

We have sent out PAS to our local media, I have also sent the World Sickle

Cell Day Proclamation to our local government officials, and have received

a responses from both our local and State officials.

. . . . . . . .

Los Angeles, CA

African American Blood Drive and Bone Marrow Registry for Sickle

Cell Disease Awareness, CHLA, KIS Foundation, Southern California SCD

Adult Group, Be the Match, Sereni Liquid Organic Green Tea and others

or individuals.

Awareness events:

Creating Online Marrow Drives for businesses, organizations, and every

year for WSCD starting June 1 thru July 19, 2009, in September for Sickle

Cell Month and in February for Black History Month.

June 19 ~ World Sickle Cell Day Awareness Activities

12 Noon - Awareness Reflection

1:00 PM to 2:30 PM. – Panel Press Conference at the Constituent Service

Center, 8475 S. Vermont Ave, Los Angeles CA 90044

jUNE 20 ~ Dream Center Blood and Marrow Drive for SCD Awareness

~ ~ ~ Future awareness focus: Libraries and Comedy Clubs.

. . . . . . . . .

We're informed that hospitals and organizations are putting WSCD

info into their newsletters!

. . . . . . . .

Other locations:

We're quite sure there are many more groups and organizations that have

planned or are planning activities.  If you care to email us your

information, we will gladly add them to our list.

. .  . . . . .

Please help spread the word about WSCD by passing on the information to your network of SCD professionals, colleagues, medical facilities, organizations, foundations, groups, families, supporters, etc. Fell free to contact me.

We thank each of you for your time and commitment to Sickle Cell!

Now that you know some of the things others are doing . . . please do something . . . . anything as it all adds up to bring about awareness! -Nita T.

III. “World Sickle Cell Day” in Los Angeles

The African American Blood Drive and Bone Marrow Registry for Sickle Cell Disease Awareness has organized a Panel Press Conference on Friday, June 19, 2009, from 1:00 PM to 2:30 PM at the Constituent Service Center, 8475 S. Vermont Ave, Los Angeles CA 90044.

Purpose of the Press Conference: Los Angeles awareness activity in observance of the United Nation’s Dec 08 resolution that Sickle Cell Disease is a global health problem and making June 19th World Sickle Cell Day for global awareness. This awareness press conference will provide information to a diverse audience consisting of community leaders, business persons, media, families and perspective donors from our public awareness team representing the many sides of sickle cell. Get a clear understanding about Sickle Cell, present care, procedures, updated medical advances and more!

Persons diagnosed with Sickle Cell, family members, medical staff, and supporters will be participating in our activity for Awareness/Reflection at 12 Noon. This is a global activity that will be done at 12Noon for each time zone.

All Sickle Cell Community members are invited as well as guests and media, however if you want to attend or participate you MUST RSVP because there really is limited seating and space!

Please contact Nita Thompson by calling 323.750.1087, email: AA4SCDAwareness@aol.com or leave a message here in guessbook

1^ST ONLINE WORLD SICKLE CELL DAY MARROW DRIVE ~ June 1, 2009 thru July 19, 2009

Some suggested activities you can do

Easy

Here are suggestions for fun, quick and inexpensive things to do as WSCD
Activities:

1. We ask people to please post the online marrow drive flyer. If you email
me, and put in the subject want the marrow flyer, I will email it back to you.
AA4SCDawareness at aol dot com

2. Awareness/Reflection at 12 Noon - Activities in Clinic, etc. Take the time
out at 12 Noon to reflect or acknowledge WSCD by doing the following:
A. Say a prayer
B. You can do a balloon release. Tie a small paper that reads, "The United
Nations made World Sickle Cell Day is June 19th!"
C. Ask a passerby if they knew it is WSCD. Ask them" do you know if you have SC
Trait? Tell them that SCD is not just a black disease . . . that is why the UN
has made World Sickle Cell Day June 19th.
D. Ask people if they donate blood. Tell a person who has SC Trait that they
can donate blood platelets!

More Planning Needed:

A. On site blood and marrow drives for SCD Awareness ~ collaboration between all 4 entities throughout the United States and the World:

· Hospital Blood Centers (Medical Staff included) and or *Red Cross

· National Marrow Donor Program or the Red Cross

· Sickle Cell Associations and/or Foundations

· SCD Patients and Parent Support Groups

*In some states the Red Cross collects blood for hospitals & registers marrow!

B. Comedy Club Participation ~ Invite your local Comedy Clubs to unite with others clubs thought out the world to acknowledge the UN resolution about Sickle Cell Anemia by jointly presenting: “Laughing in Crisis!” for SCD Awareness. The proceeds (some or all) could go to SCD organization(s) of their choice!

C. Contacting Legislative Representative

Create your personal SCD Advocacy Letter, then
Make an appointment to visit locally and give it directly to your rep. or their staff member or send it by email, or fax.
Contact Officials for a “Proclamation” Presentation during your event or later

D. Awareness/Reflection at 12 Noon *Everywhere for SCD on June 19^th.