United to Conquer Sickle Cell Disease

Membership

The Sickle Cell Disease Coalition (SCDC) is composed of public health, research, and provider organizations; patient groups; faith-based organizations; federal agencies*; industry; and funding organizations with an interest in Sickle Cell Disease (SCD). Every participating organization has their own policies and priorities and the SCDC therefore will not set policy for the Coalition. Furthermore, each SCDC member has the independence and discretion to opt out of any Coalition discussion and/or activity.

A staff member from each group will be asked to serve as the organization’s representative to the SCDC. The first face-to-face meeting will be scheduled in the fall of 2016 in Washington, DC, with additional face-to-face meetings scheduled as needed. Conference calls will be scheduled to address more timely items. Representatives are encouraged to actively participate in the SCDC discussions.

The American Society of Hematology (ASH) will support the administrative costs of the SCDC, so there will be no need for dues in order to be a member of the Coalition. ASH will also provide the administrative management of the Coalition. The Coalition is not offering membership to individuals or institutions; however, if individuals are interested in staying abreast of Coalition news and activities, they are encouraged to register for SCDC updates.

A representative group of organizations will serve as the initial Coalition Steering Committee. (It is anticipated that seven groups will initially serve in this role. ASH will serve as one of the groups and six additional groups were invited based on their involvement with ASH’s recent SCD activities.) The Steering Committee will help:

  1. identify additional organizations who should be part of the SCDC; and
  2. suggest strategy for the Coalition, which will be considered by SCDC members.

Current Members

*Member belongs to the Steering Committee.

Benefits of Membership and Participation

  • Gain access to Coalition activities.
  • Participate in an international network of key stakeholders interested in SCD and engage in joint action.
  • Learn about timely SCD research, resources, and partnership opportunities.
  • Promote your organization’s work and resources.
  • Amplify the voice of the SCD community.

Organizing Principles

  • Broadly representative: The Coalition’s membership and activities will reflect the range of audiences, organizations, and interests that together influence achievement of the Coalition’s mission and goals.
  • Science-based: The Coalition will center its focus and considerations on the best available science and the tenets and requirements of public health inquiry and action.
  • Apolitical: The Coalition will focus solely on its mission and goals and will operate in a manner that is strictly non-partisan and apolitical.
  • Autonomous: While striving to define and support achievement of shared purposes among Coalition members, the Coalition recognizes and respects the autonomy and independence of its member organizations.
  • Any and all uses of the Coalition name, logo, materials, and activities are subject to review and approval by Coalition members.
  • The Coalition will not endorse commercial products.
  • The Coalition will publicly identify the names of members on its website and in media materials.
  • The Coalition will not consider and advance legislation or regulatory recommendations, but may serve as a forum for discussion of issues related to such purposes.

*Federal agency representatives will not participate in SCDC discussions related to advocacy.

Guiding Principles for Participants

These Guiding Principles set forth the qualifications for initial participation and the conditions for continued participation in the Sickle Cell Disease Coalition. Groups wishing to participate in the Coalition initially must demonstrate that they meet the criteria applicable to the relevant participant category. Existing participants are expected to continue to meet the criteria applicable to their participant category and to conduct themselves in accordance with these Guiding Principles to continue their participation in the Coalition.

View Guiding Principles for Participants

Membership Criteria

Membership is limited to national and international organizations with an interest in sickle cell disease. Organizations interested in joining the SCDC are asked to confirm the group’s membership by completing the form below.

If you are an individual, we encourage you to learn more about ways you can get involved.

Please contact the SCDC Coordinator to request additional information.


Primary Contact





*Identify the priority areas that your organization is currently working on or is interested in working on.


Every SCDC member is asked to join one SCDC working group that aligns with their organization’s priorities; the opportunity to participate in a second group is an option, but not a requirement. These work groups provide an opportunity for members to hear about their respective areas of interest, and more importantly to advance items or projects within those categories. Please indicate which working group(s) your organization/company would like to join.


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