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Partner Frequently Asked Questions


Q: Is there a fee to partner?
A: Currently there is not a fee nor membership dues to partnering with the Consortium. A partner fee is the decision of the General Assembly and must be voted upon by a quorum prior to implementation.

Q: Do partners raise funds for the Consortium?
A: Partners are asked to participate in at least one main fundraising activity organized by the Consortium each year.

Q: What are the benefits of joining the Consortium?
A: All partners have an equal voice (regardless of size) in identifying and prioritizing the projects, platforms and initiatives of the Consortium. Partners have access to CBO resources, including access to the online webinar platform (up to 100 participants), yearly website and social media checkups, access to a non-profit accountant for annual review, best practices webinars, discounts on website development and tax document preparation, group discounts to sickle cell conferences and symposiums. By combining our voices Consortium partners are able to make a greater impact in our communities. Partner benefits are growing and evolving. Private login for additional services and benefits in development.

Q: What are the requirements for Partnership?
A: We welcome ALL sickle cell CBOs, patients, advocates and community supporters who are active advocates.

Patients and Caregivers must submit an Independent Patient Caregiver Advocate partnership form and complete their community profile annually.

There is a credentialing process for CBOs. Full Credentialing occurs every five (5) years, and send via email any changes in infrastructure, organization name, and or location. Current and prospective CBOs must submit documentation verifying non-profit status and annual submission of IRS Form 990. (We do not require the actual form, only verification of submission. Assistance is available for all partners). Credentialed partners must update their Partner CBO Profile annually.

Patient organization and groups are welcome to join the Consortium. These groups have not yet gained non-profit status, but are actively working towards this status or are sponsored by a healthcare provider or entity. Existing credentialed partners may also serve as sponsors for patient groups. This group must also complete a Partnership Form and must update their Partner Profile annually. All forms can be found at www.sicklecellconsortium.org