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