ABOUT CARE BEYOND DIAGNOSIS

Care Beyond Diagnosis is a forward-thinking, nonprofit organization with a passion for improving patient outcomes for those afflicted with a rare disorder. Our mission, since Yanique began this organization, was to provide support for patients, families and communities following a rare disease diagnosis, with an emphasis on those living in countries lacking a solid healthcare infrastructure. Our goal was to achieve our mission, while not replicating many of the wonderful patient organizations which are currently serving many of these patient groups.

HOW?

With a belief that any amount of support can bring just a little bit of hope to a family, we focused our patient support mainly on post-diagnosis mobility aids for patients that were experience significant reduction in QoL due to trouble maintaining a social and active lifestyle. To date, this has been mainly sourcing and if possible, purchasing and donating the equipment. While financial requests are the most common of needs, our team is really interested in empowering patients to be their own advocates. We offer mentor services and work with patients to educate themselves on how they might be able to make a difference in their community.

Being an organization with a passion for serving others and improving Quality of life is unfortunately only possible when funds are available. In order to create a system which in itself is sustainable, CBD is positioning itself as a Medical Communications organization with a specific focus on Rare Disease Clinical Guideline Development.

CBD saw an amazing opportunity to provide a service which works towards our mission of supporting patients while funding our smaller patient support projects. Clinical Guidelines when created transparently and methodically through a validated process improve patient outcomes by either setting or improving a standard of care for all patients, remove obstacles to access of medical interventions and can even improve the reimbursement process for a patient and their family.

Guidelines also can empower a family and/or caregivers to advocate for themselves. It educates the users to understand what, how and when something should be happening to a patient based on their diagnosis.

It is our hope that through Guideline Development, CBD can continue supporting individual patients for years to come.

ABOUT the founders

Co-Founder of Care Beyond Diagnosis, Yanique Donohue, was introduced to the Rare Disease world in a way very similar to most families in this community -- a family member becoming a patient. This moment greatly impacted their family's journey in life and had catapulted the Hendriksz' family into this area of study. 

While their family's medical struggles led them to the UK from South Africa in 1996, many families around the world do not have the ability to seek treatment outside of their community. 

Yanique and her husband Jeffrey established Care Beyond Diagnosis in 2016 in order to bring new hope for patients in the developing world after a diagnosis of a rare disease. 

We believe that every individual diagnosed with a rare disorder has the right to first class care and support, regardless of location or economic status.

We understand that there are many social, physiological, and economical needs that factor in to the well-being of an individual with a rare disorder. We strive to meet the needs beyond medical diagnosis and medical treatment through tailored support programs.