SCDC Guiding Principles

The SCDC is comprised of organizations representing diverse stakeholders within the sickle cell community. The Coalition’s membership largely includes public health, research, and provider organizations; patient groups; faith-based organizations; regulatory agencies; corporate organizations; philanthropic foundations and other entities with an interest in sickle cell. Definitions and specific membership eligibility requirements for each of these organization types is listed later in this section. 

 All organizations interested in applying to join the SCDC must meet the following minimum qualifications: 

1. Demonstrate that it is a legally established and recognized entity in good standing with its local, state, and/or national jurisdiction;  
2. Maintain an active website;  
3. Identify any past, current, and/or future initiatives or programming advanced by the organization related to sickle cell; and 
4. Explain how the organization intends to engage with the SCDC and its members around sickle cell. 

More specific membership eligibility requirements for different types of stakeholder organizations are listed below:  

•  National / International Patient Advocacy Organizations – Organizations consisting of community members and advocates working at the national and/or international level to spread sickle cell awareness and support individuals living with sickle cell and their caregivers. National and international-level patient advocacy groups interested in joining the SCDC must: 

1. 1. Demonstrate active programming, classes, communications, or other initiatives to support and advocate for people living with sickle cell and their support systems; 
   2. Have at least one hematologist or other clinical expert in SCD on the organization’s board, advisory committee and/or medical/scientific board; 
   3. Demonstrate the national or global reach of the organization; and 
   4. Demonstrate that it is an established 501 c(3) non-profit corporation in good standing. 

• Community-Based Patient Advocacy Organizations [U.S. Only] – Organizations consisting of community members and advocates working at the local, state, or regional level in the U.S. to support individuals living with sickle cell and their caregivers. To promote investment in existing CBOs and not infringe on the leadership of national / international patient advocacy groups, the SCDC shall not engage more than two (2) community-based organizations (CBO) from each of the following regions at a time: Pacific, West South Central, East South Central, East North Central, West North Central, Mountain, South Atlantic, Middle Atlantic, New England. U.S.-based CBOs interested in joining the SCDC must:  

1. 1. Demonstrate active programming, classes, communications, and other initiatives to support sickle cell warriors in their locality;​ 
   2. Have at least one hematologist or other clinical expert in SCD on their board; 
   3. Demonstrate that it is a registered member in good standing of SCDAA, inc.’s national chapter; and 
   4. Demonstrate that it is an established 501c(3) non-profit corporation in good standing. 

• Corporate Organizations – For-profit companies - such as those in the pharmaceutical, biotechnology, clinical research, and insurance industries - may become members of the SCDC if they meet the following criteria:  

• 1. Have a SCD-related program, therapy, or device currently on the market or in an active phase 1, 2, or 3 trial;   
  2. Demonstrate that it is properly incorporated and in good standing in its state of incorporation;   
  3. Pay the applicable membership fees (see MEMBERSHIP FEES).  

Representatives from corporate may not serve in a SCDC leadership, nor vote on SCDC matters. Corporate members should also note that the SCDC is not a platform for promotion of commercial products and services.  

• Public Health / Research Organizations – Organizations that are engaged in the science of protecting and improving the health of people living with SCD and their communities by promoting healthy lifestyles and informed decision making, researching symptom prevention and management, implementing quality improvement measures for care delivery, and/or detecting, preventing, and responding to social and environmental factors that worsen disease. When applying to join the SCDC, public health and research organizations must meet the general SCDC membership eligibility requirements and demonstrate the national or global reach of its efforts. 

• Provider / Researcher Organizations – Organizations that represent a particular group of medical or research professionals or entities with an interest in improving outcomes for people living with SCD.  When applying to join the SCDC, provider and researcher organizations must meet the general SCDC membership eligibility requirements and demonstrate the national or global reach of its efforts.   

• Regulatory Agencies – National and international government agencies and departments may participate in the Coalition but may not participate in any discussions related to SCDC members’ advocacy efforts. If a regulatory agency is unable to officially join the Coalition because of restrictions at the agency, then it may be allowed to participate as an “ex-officio” member of the SCDC.  When applying to join the SCDC, regulatory agencies must meet the general SCDC membership eligibility requirements and demonstrate the national or global reach of its efforts. 

• Foundations -- Private foundation or grantmaking public charities with an interest in SCD, whose principal purpose is to provide grants to unrelated organizations, institutions, or individuals for scientific, educational, cultural, religious, or other charitable purposes. If a foundation is unable to officially join the Coalition because of internal rules, then it may be allowed to participate as an “ex-officio” member.  When applying to join the SCDC, foundations must meet the general SCDC membership eligibility requirements.  

• Faith Based Organizations – Organization whose values are based on faith and/or beliefs, which has a mission based on social values of the particular faith, and which most often draws its activists from a particular faith group to support the sickle cell community. Faith-based organizations seeking to participate in the SCDC should provide information on activities they are leading related to health education, promotion and interventions for individuals and families concerned with sickle cell.  When applying to join the SCDC, faith-based organizations must meet the general SCDC membership eligibility requirements. 

• Other Groups or Organizations Focused on SCD – Other groups and organizations working on sickle cell advocacy, research, clinical care, or education and training may seek participation in the Coalition by submitting an application outlining how they meet the general SCDC membership eligibility requirements and demonstrating in writing how their participation will further the mission of the SCDC; such groups’ participation shall be at the sole discretion of the Steering Committee.    

The SCDC encourages organizations operating at the national and/or international level to serve as the representative for their respective constituencies, as to streamline and harmonize efforts; however, the Steering Committee may accept organizations represented under an existing SCDC member on a case-by-case basis.  

Each SCDC member organization must identify at least one representative to participate in the coalition on behalf of the organization. SCDC member organizations may identify up to five representatives to serve on the SCDC at a single time. 

Relatedly, the Coalition is currently not offering membership to individuals or individual institutions (i.e., individual universities, hospitals, health care systems, etc.). Individuals and organizations ineligible for membership on this basis are encouraged to stay abreast of Coalition news and activities by signing up for the monthly SCDC Update e-newsletter and following the SCDC on Twitter (@ConquerSCD). 

All SCDC members are expected to conduct themselves in a manner that fosters equitable inclusion and respect for all colleagues, races, cultures, disabilities, ages, and genders. Any disagreements and discussions should focus on positions and not individuals or specific organizations. Furthermore, all SCDC members must comply at all times with any and all applicable laws and regulations governing their conduct in their respective jurisdictions, as well as these Guiding Principles. Particular considerations relevant to each of the SCDC member categories are set forth under the “MEMBERSHIP ELIGIBILITY & COALITION PARTICIPATION” section.   

 SCDC members should conduct themselves in a manner consistent with the primary focus of the Coalition, which is the identification, coordination, and communication of innovative and ongoing efforts to conquer sickle cell. As such, all SCDC members are expected to support evidence-based initiatives and share evidence-based information when engaging with the Coalition. Relatedly, SCDC members are encouraged to use the Coalition as a platform to inform other participating groups and organizations about their ongoing sickle cell-related work and invite other participating groups to help develop, implement and fund those and other SCD-related projects. To this end, SCDC members are expected to notify the Coalition of any relevant initiatives, resources, requests for partnership, or other information they are leading and/or aware of by sending a written email to coordinator@scdcoalition.org and sharing verbal updates at the end of the SCDC meetings.  

 All SCDC members are expected to be active and engaged participants in the Coalition and its activities. As such, SCDC members are expected to attend at least three (3) SCDC-Wide meetings each year. Additionally, SCDC members are expected to assign at least one (1) organizational representative to serve in at least one (1) SCDC subcommittee SCDC member representatives participating in an SCDC subcommittee are expected to attend at least three (3) of these SCDC subcommittee meetings. SCDC members are also encouraged to propose presentation or discussion topics for future SCDC meetings, volunteer to help with SCDC projects outside of meetings, and review and provide written feedback on drafted materials circulated for SCDC review. 

However, members may not use the Coalition, its facilities, or their Coalition membership to

(a) sell, market, promote, or solicit investment in their commercial products or services or to discuss any aspect of such sale, marketing or promotion of their commercial products or services, or

(b) recruit research participants, without explicit approval from the Steering Committee. An organization that attempts to use the SCDC for commercial sales, corporate promotion, or product marketing purposes without prior approval from the Steering Committee will have their SCDC membership terminated.   

When providing information for dissemination via the Coalition, SCDC members are expected to be honest, accurate, objective and complete. All content will be reviewed by ASH administrators and there is not a guarantee that all of the members’ content will be published on the SCDC communication channels. As noted above, commercial marketing and research recruitment information will not be shared through the SCDC’s communication outlets.   

 Any content provided via the Coalition’s communications channels is purely for informational purposes and is not intended to provide medical advice or to substitute for consultation with a medical professional.  The views, opinions, and other statements presented by an SCDC member via the Coalition’s communication resources are solely those of the particular SCDC member, have not been reviewed, approved or endorsed by the Coalition, and do not necessarily represent the views, opinions or statements of the Coalition as a whole or any other Coalition member (unless otherwise specifically noted).    

No SCDC member or group of members may:

1. distribute nonpublic information about another Coalition member relating to that member’s SCDC-related activities without the permission of the other member;
2. use the Coalition name, logo, materials, and activities without the prior express written permission of the SCDC Steering Committee;
3. use its participation in the SCDC for grant, fundraising or other revenue-generating purposes without the prior express written permission of the SCDC Steering Committee; or
4. lobby Congress, state legislatures or other government officials, or engage in public advocacy in the Coalition’s name.   

The Coalition will publicly identify the names and logos of SCDC members on the SCDC website and in SCDC media materials, as appropriate, unless the member requests that its name and/or logo not be used. 

Participants are expected to conduct their business dealings with the Coalition, other Coalition Participants, and the public in general, lawfully and ethically. The Coalition will not endorse or promote any Industry Participant or its products. Likewise, participation in the SCDC should not be used to promote the commercial products or services of any particular participants or to discuss the terms or conditions of sale of such commercial products or services. The SCDC is not a platform for Industry Participants to promote their commercial interests.

Membership in the SCDC is free, expect for for-profit corporations. Administrative and programmatic costs for the SCDC are supported by the SCDC’s secretariat (ASH), as well as revenue generated from corporate membership fees.​ New SCDC initiatives may also be introduced to further fundraise for special SCDC activities. 

The Coalition expects to provide a platform for SCDC members to inform other organizations of their SCD-related projects and to partner with other members on projects of shared interest. Despite participation by multiple SCDC members, these projects will not be considered SCDC-led initiatives unless otherwise stated. 

If an SCDC member would like to formally develop, fund, or collaborate on a project with the SCDC, a project proposal must be presented to the Steering Committee for approval as Coalition projects. Relatedly, the Steering Committee may recommend such projects for funding by other Coalition members. The SCDC does not provide any direct funding to organizations or initiatives. 

Recognizing that the SCDC is an international alliance, and each member may have its own policies and priorities with respect to governmental advocacy:

1. no Coalition member may undertake or engage in advocacy before any federal, state or local government or government agency in the name of the Coalition; and
2. the Coalition shall not undertake or engage in such advocacy before any such government or government agency.  

Although the Coalition will not directly advance legislative or regulatory recommendations, it may serve as a forum for discussion of issues related to such purposes. However, each SCDC member organization has the discretion to opt out of any such discussion. In addition, members of the Coalition, individually or collectively, may engage in such advocacy before federal, state or local governments or government agencies, provided that they do not do so in the name of the Coalition.  

No Federal agency representatives will participate in Coalition discussions related to advocacy. 

The SCDC is governed primarily by three types of leadership bodies: its Secretariat, Steering Committee, and subcommittee Co-Chairs. The roles and responsibilities for each of these governing entities are outlined below: 

• Secretariat – The Coalition’s secretariat provides administrative, communications, meeting organization, legal, and project management support to ensure steadfast operations of the SCDC. A detailed outline of the SCDC’s secretariat’s responsibilities is listed below: 

• • Administrative activities, including record keeping, calendar management, committee staffing, member onboarding, meeting documentation, conflicts of interest (COI) disclosure collection, and SCDC mailbox maintenance. 

• • Communications activities, including managing the Coalition’s external information sharing platforms, like the SCDC’s website (www.scdcoalition.org), the SCDC Twitter account (@ConquerSCD), and monthly SCDC Update e-newsletter, as well as the Coalition’s internal information sharing platforms, like the weekly SCDC Flash Friday emails and SCDC Symposia Calendar.  

• • Legal activities, including procuring legal services for the Coalition on matters regarding its Guiding Principles, COI communications, and other legal matters that arise related to the SCDC.  

• • Meeting activities, including preparing and facilitating all bimonthly SCDC-Wide meetings, quarterly Steering Committee meetings, and annual SCDC Summits, as well as supporting subcommittee co-chairs in planning and facilitating their bimonthly meetings. 

• • Project management activities, including leading and coordinating the development and dissemination of any projects the SCDC and its subcommittee choose to pursue. 

As founder and primary funder of the SCDC, ASH will serve as the Coalition’s secretariat. ASH staff will be assigned to complete the roles and responsibilities outlined above. 

• Steering Committee – The Coalition’s Steering Committee oversees the Coalition’s strategy and membership decisions. A detailed outline of the SCDC’s Steering Committee’s responsibilities is listed below: 

• • Leadership selection activities, including selecting subcommittee Co-Chairs to lead SCDC Working Groups and Task Forces. 

• • Membership activities, including evaluating SCDC membership applications, identifying additional organizations that should join the SCDC, and ruling on any disputes among SCDC members or violations of the SCDC’s Guiding Principles. 

• • Strategic activities, including prioritizing activities and competing interests within the Coalition, offering guidance and resource distribution to SCDC projects and subcommittee activities, and recommending ways for the SCDC to enhance and streamline operations.  

The SCDC Steering Committee is comprised of three (3) organizations – ASH, Sickle Cell Disease Association of America (SCDAA), and Global Alliance of Sickle Cell Disease Organizations (GASCDO) – as well as the Co-Chairs of the Coalition’s five (5) subcommittees. ASH, SCDAA, and GASCDO serve as the three standing organizational members of the Steering Committee due to their roles as SCDC Secretariat, national convener of SCD community-based organizations (CBOs), and international convener of SCD CBOs, respectively.   

• Subcommittee Co-Chairs – The subcommittee Co-Chairs lead the Coalition’s Working Groups and Task Forces and provide vital guidance with strategic planning, member engagement, and subcommittee initiatives. A detailed outline of the subcommittee Co-Chairs’ responsibilities are listed below: 

• • Meeting activities, including developing the agenda, identifying relevant speakers and guests, and facilitating discussion for all meetings of their respective subcommittee. 

• • Membership activities, including engaging with subcommittee members during and in between subcommittee meetings, recommending new organizations to engage in subcommittees, and mediating any conflict that arises within the subcommittees. 

• • Project management activities, including contributing to the project’s development, recommending solutions to roadblocks that arise, and reviewing final products for quality assurance. 

• • Strategic activities, including offering guidance on the SCDC-Wide policy and programs, maintaining the subcommittee charter and goals, and regularly meeting with ASH staff to check-in and collectively brainstorm. 

Subcommittee Co-Chairs will serve for a term of two to three (2-3) years, ideally alternating with their Co-Chair partner. These term limits may be extended under extenuating circumstances with the approval of the Steering Committee. 

All Steering Committee representatives and subcommittee Co-Chairs must complete and maintain an accurate conflict of interest (COI) form and disclosure slide to be eligible for their leadership position and to remain in good standing with the Coalition. COI updates must be reported within four (4) weeks of taking effect. 

A SCDC member will be notified of the violation and asked to cease the violating conduct and/or to remedy it. Failure to cease the violating conduct or engaging in other conduct violating the Guiding Principles of the SCDC may subject the violating member to sanctions, up to and including revocation of their right to participate in the SCDC. Sanctions for violating members will ultimately be determined by the Steering Committee.