kay-diene robinson, mph, chw
Contact Kay-Diene

Kay-Diene Robinson, MPH, CHW is a proud sickle cell warrior. Upon completion of her undergraduate degree, she began her advocacy journey by volunteering with the Sickle Cell Association of New Jersey in July of 2013. It was through this organization she discovered the possibility of a cure through bone marrow transplantation. On September 11, 2015, Kay-Diene underwent an allogeneic stem cell (bone marrow) transplant in hopes of curing her disease. In December of 2015, Kay-Diene was miraculously cured of Sickle Cell Disease.

As a professional patient advocate, Kay-Diene prides herself on being a living testament to the famous quote by Ghani “Be the change you wish to see in the world.” Thus, in September of 2018, she accepted the role as a Board Member for The Pain Community, a non-profit organization dedicated to educating and advocating on behalf of all individuals living with any condition, disorder, or disease that has a pain component. Her role as a Board Member, Secretary, and Social Media Director for The Pain Community has allowed her to facilitate and spearhead the official partnership between The Pain Community and the Sickle Cell Disease Association of America, as of July, 2019.

Her work as a trained Community Health Worker has allowed her to educate hospital personnel, including physicians, nurses, and support staff within multiple hospital systems on Sickle Cell Disease, new emerging therapies related t sickle cell disease and other relevant topics of importance.

She believes it is her divine purpose to develop and facilitate processes that will guide those living with Sickle Cell Disease and to implement effective methods of change that seek to guide individuals to find their personal and professional answers to the question, “what is your why?”

Areas of Advocacy Expertise:

  • Nonprofit Organization

  • Fundraising

  • Social Media & Marketing

  • Pharma/Biotech Advocacy

  • LinkedIn - White Circle

The Rare Advocacy Movement (RAM) is a novel rare disease community-based advocacy network designed to address the issues that affect the real world people of the rare disease community.  RAM is the only community-based Center of Insight and Collaboration Zone offering rare disease stakeholders authentic, comprehensive real world insights, from the source. Each RAM member has made a public vow to always act in the best interest of the rare disease community by abiding by the Code of Conduct for Membership. Those who violate the Code of Conduct for Membership risk removal from the RAM membership and access to the global network via majority vote.