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

kaydiene.a.robinson@gmail.com​

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 patient advocacy initiative focused on documenting the evolving complex structure and unique dynamics of the rare disease patient advocacy landscape. RAM serves as a Center of Insight (COI) for those interested in participating in collaborative patient advocacy initiatives and working groups within the rare disease industry. The RAM membership is comprised of a network of patient advocacy professionals that have vowed to abide by the established Code of Conduct for Membership.