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EVENTS

UPCOMING & RECENT EVENTS
October 16, 2017 at 12:00 am DC

Rare Disease & Orphan Products Breakthrough Summit

Host: NORD

Facts About Sickle Cell Disease:

Sickle cell disease (SCD) is a group of inherited red blood cell disorders.

In SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle.” People with SCD can live full lives and enjoy most of the activities that other people do. If you have SCD, it’s important to learn how to stay as health as possible.

Read More

(Source: www.cdc.gov)

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GENERAL ASSEMBLY

The Sickle Cell Community Consortium is organized in a manner similar to the United Nations, wherein each CBO retains its individual autonomy and joins collectively with independent patients and caregivers to form the GENERAL ASSEMBLY OF ADVOCATES AND CBOs.  The General Assembly is the decision-making body of the Consortium and is made up of credentialed CBOs, sponsored patient groups, patient and caregiver advocates, community partners and medical/research advisers.  This group meets annually to apply the framework of Collective Impact to DEFINE and PRIORITIZE the top needs, gaps and problems within the sickle cell community, and then  collectively DEVELOP and EXECUTE patient-powered solutions to these community-identified concerns. Working in partnership with community partners and healthcare/research advisers, patients and caregivers lead the teams dedicated to tackling each priority.

In addition to determining yearly priorities, this group is responsible for major Consortium infrastructure decisions. Each partner in the General Assembly sits on at least one Committee and/or Sub-Committee responsible (in addition to one priority project).  The Committees maintain the infrastructure of the Consortium. The Consortium Charter, ByLaws and Rules of Procedure provide further information on the structure of the Consortium.

The Consortium Charter:
ByLaws:
Rules of Procedure :

The Sickle Cell Community Consortium is pleased to announce the 2017 Leadership Summit & General Assembly of Advocates and Community-based organizations (CBOs). The Consortium is a 501(c)(3) not-for-profit collective of Sickle Cell Community-Based Organizations (CBOs), Community Partners, Sponsored Patient Organizations, Patient/Caregiver Advocates and Healthcare/Research Advisors- each dedicated to sickle cell advocacy, education, research, community awareness and patient support throughout the country. The Consortium was created to provide an organizing arm to enable our communities to identify and address local and national needs. Patterned after the United Nations, and following a model of Collective Impact, we provide a platform to “amplify the power of the patient voice”. As part of this collaborative effort, we are excited to host the 2017 Leadership Summit and General Assembly, March 16-19, 2017 in Atlanta, Georgia. This meeting is open to the public. You are invited to join us as we continue to effect patient-powered change in our community.

The Leadership Summit and General Assembly is the main meeting of the Consortium, during which patient and caregiver-identified priorities are defined. All Consortium partners from throughout the country gather annually to participate in this meeting. We use this time to provide training and best practices session on:

  • Effective advocacy in the rare disease space
  • Maintaining strong sickle cell CBOs.

Participants also participate in the business meeting of the Consortium and the annual General Assembly of Advocates and CBOs.

The General Assembly is the primary organ and decision-making body of the Consortium. Comprised of partnered CBOs, sponsored patient organizations, and patient and caregiver advocates, this group is tasked with defining and prioritizing the top needs and gaps within the sickle cell community; developing community-based solutions; and identifying the CBO, community and corporate partnerships best equipped to execute those solutions. Working in partnership with healthcare/research advisers and community partners, patients, caregivers and CBOs lead the teams dedicated to tackling each priority.

This year we are excited to launch our CLINICAL TRIALS INITIATIVE as a continuation of the Patient-Centered Outcomes Initiative of 2016. The focus of our Patient-Centered Outcomes Initiative is two-fold:

  • Direct involvement of Patients and Caregivers in topic generation and prioritization for Patient-Centered Outcomes Research
  • Patient-focused development of Alternative Endpoints and Surrogate Markers in Clinical Trial Design

As we move into the next phase of this initiative, we will apply the collective power of the Patient, Caregiver and CBO General Assembly to define patient-identified barriers to minority participation in clinical trials. Our strength is in our unity. Drawing upon existing research, and in partnership with the Consortium network of community partners and healthcare/research advisers, we will tackle the social constructs and deeply rooted misconceptions that inform patient/caregiver opinion and impede increased participation in clinical trials. For more information, to register to attend, or sponsorship information, please contact Dr. Lakiea Bailey at Director@sicklecellconsortium.org. We look forward to working with you.

Sincerely,

Lakiea J Bailey, Ph.D.
Executive Director
Sickle Cell Community Consortium

+ About

The Sickle Cell Community Consortium is organized in a manner similar to the United Nations, wherein each CBO retains its individual autonomy and joins collectively with independent patients and caregivers to form the GENERAL ASSEMBLY OF ADVOCATES AND CBOs.  The General Assembly is the decision-making body of the Consortium and is made up of credentialed CBOs, sponsored patient groups, patient and caregiver advocates, community partners and medical/research advisers.  This group meets annually to apply the framework of Collective Impact to DEFINE and PRIORITIZE the top needs, gaps and problems within the sickle cell community, and then  collectively DEVELOP and EXECUTE patient-powered solutions to these community-identified concerns. Working in partnership with community partners and healthcare/research advisers, patients and caregivers lead the teams dedicated to tackling each priority.

In addition to determining yearly priorities, this group is responsible for major Consortium infrastructure decisions. Each partner in the General Assembly sits on at least one Committee and/or Sub-Committee responsible (in addition to one priority project).  The Committees maintain the infrastructure of the Consortium. The Consortium Charter, ByLaws and Rules of Procedure provide further information on the structure of the Consortium.

The Consortium Charter:
ByLaws:
Rules of Procedure :
+ Organization

+ Past General Assemblies
+ Current General Assembly

The Sickle Cell Community Consortium is pleased to announce the 2017 Leadership Summit & General Assembly of Advocates and Community-based organizations (CBOs). The Consortium is a 501(c)(3) not-for-profit collective of Sickle Cell Community-Based Organizations (CBOs), Community Partners, Sponsored Patient Organizations, Patient/Caregiver Advocates and Healthcare/Research Advisors- each dedicated to sickle cell advocacy, education, research, community awareness and patient support throughout the country. The Consortium was created to provide an organizing arm to enable our communities to identify and address local and national needs. Patterned after the United Nations, and following a model of Collective Impact, we provide a platform to “amplify the power of the patient voice”. As part of this collaborative effort, we are excited to host the 2017 Leadership Summit and General Assembly, March 16-19, 2017 in Atlanta, Georgia. This meeting is open to the public. You are invited to join us as we continue to effect patient-powered change in our community.

The Leadership Summit and General Assembly is the main meeting of the Consortium, during which patient and caregiver-identified priorities are defined. All Consortium partners from throughout the country gather annually to participate in this meeting. We use this time to provide training and best practices session on:

  • Effective advocacy in the rare disease space
  • Maintaining strong sickle cell CBOs.

Participants also participate in the business meeting of the Consortium and the annual General Assembly of Advocates and CBOs.

The General Assembly is the primary organ and decision-making body of the Consortium. Comprised of partnered CBOs, sponsored patient organizations, and patient and caregiver advocates, this group is tasked with defining and prioritizing the top needs and gaps within the sickle cell community; developing community-based solutions; and identifying the CBO, community and corporate partnerships best equipped to execute those solutions. Working in partnership with healthcare/research advisers and community partners, patients, caregivers and CBOs lead the teams dedicated to tackling each priority.

This year we are excited to launch our CLINICAL TRIALS INITIATIVE as a continuation of the Patient-Centered Outcomes Initiative of 2016. The focus of our Patient-Centered Outcomes Initiative is two-fold:

  • Direct involvement of Patients and Caregivers in topic generation and prioritization for Patient-Centered Outcomes Research
  • Patient-focused development of Alternative Endpoints and Surrogate Markers in Clinical Trial Design

As we move into the next phase of this initiative, we will apply the collective power of the Patient, Caregiver and CBO General Assembly to define patient-identified barriers to minority participation in clinical trials. Our strength is in our unity. Drawing upon existing research, and in partnership with the Consortium network of community partners and healthcare/research advisers, we will tackle the social constructs and deeply rooted misconceptions that inform patient/caregiver opinion and impede increased participation in clinical trials. For more information, to register to attend, or sponsorship information, please contact Dr. Lakiea Bailey at Director@sicklecellconsortium.org. We look forward to working with you.

Sincerely,

Lakiea J Bailey, Ph.D.
Executive Director
Sickle Cell Community Consortium

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