Read a message from our Chief Medical Officer on the precautions you can take during the COVID-19 crisis to help #FlattenTheCurve:

Skip to main content

Rare Disease Patients in Low-Income Countries to Receive Improved Access to Key Data Through Backpack Health and Care Beyond Diagnosis (CBD) Partnership

Backpack Health’s Cloud-Based Mobile App Offers Patients Centralized Platform to Manage Health Data and Join Disease-Specific Global Registries

DOVER, MA and NASHVILLE, TN – November 5, 2018 – Backpack Health and Care Beyond Diagnosis (CBD), in conjunction with Professor Chris Hendriksz MD, CEO of FYMCA Medical Ltd, have partnered to offer Backpack Health’s health management application to members of rare disease patient organizations in low-income countries.

“CBD is an important initiative for supporting those diagnosed with a rare disease, especially in developing countries, and we are honored to serve CBD’s community of rare disease patients to expand patient access to digital tools that will help them manage and control their own health journeys,” said Jim Cavan, CEO and Founder of Backpack Health. “Together, our efforts to support both patients and medical research will have an even greater impact on the rare disease community.”

In addition to Backpack Health’s health data management app, CBD, with medical oversight from Professor Hendriksz and his team at FYMCA Medical Ltd, will develop tools and assessments to further measure rare disease symptoms. This critical health data can assist with drug development and disease management.

“CBD was in the early stages of developing our own personal health database initiative from scratch when we came across Backpack Health’s interface. We were immediately keen to join forces so that we could offer rare disease patients a disease-specific platform,” said Yanique Donohue, co-founder of CBD. “Backpack Health is the fulfillment of what many people in the rare disease community have needed: a patient-owned, patient-accessible and highly shareable health data platform, all on a user-friendly application.”

All founded after experiencing the diagnosis of close family members, Backpack Health, CBD and FYMCA Medical are deeply rooted in the commitment to empower rare disease patients via information. By supporting patients with resources to manage their health data, connecting patients to disease-specific registries, and providing an easy means to contribute to medical research, Backpack Health and CBD’s partnership will further improve the lives of those suffering from rare diseases.

“Patient-centered care can only be achieved when patients have the ability to capture their own journey with relevant data, set their own quality of life goals and share this information with their health care providers, whilst maintaining ownership,” said Professor Hendriksz, who is also a Professor of Pediatrics and Child Health at the University of Pretoria, South Africa. “This opens the opportunity to share their own management plan and educate the non-expert health providers on their rare disease. FYMCA Medical is proud to be involved with organizations like CBD and Backpack Health that aspire to achieve this.”

About Backpack Health

Backpack Health, LLC builds secure, innovative information tools to help people manage their health journey – including wellness, illnesses, injuries, and chronic health conditions. The Backpack Health mission is to make it easy for everyone to access, own and control their health information to support better health care and attain better health for themselves, their loved ones and their communities. Backpack Health provides a platform for organizations to engage patients, collect up-to-date data and build communities around the globe. To assure data protection for its users’ information, Backpack Health complies with the EU General Data Protection Regulation (GDPR), adheres to its data protection principles, and participates in the EU-U.S. and Swiss-U.S. Privacy Shield Frameworks. Learn more at

About Care Beyond Diagnosis

Care Beyond Diagnosis (CBD), a 501c3, Non-profit organization based in Nashville, Tennessee, has a mission of supporting patients, families and communities in low-income countries, following a rare disease diagnosis. As a sibling of a rare disease patient, Co-CEO, Yanique Donohue, is passionate about creating unique and sustainable projects to provide care, beyond expensive treatments. Yanique’s family is originally from South Africa and after exhausting all local medical knowledge, moved to the UK looking for answers. CBD believes that all patients, regardless of their economic status or geographic location has the right to first class care.

About FYMCA Medical Ltd.

FYMCA Medical Ltd was set up as a dedication to the son of FYMCA’s directors Chris and Flo, who had a rare disorder, the exact cause of which was never identified. In their search for knowledge and a diagnosis, the family had to move to another country. FYMCA is therefore passionate about developing and implementing a global medical educational program, incorporating face-to-face symposiums, consultations and lectures along with a mentoring option for clinicians on the program. FYMCA believes knowledge liberates, empowers and gives hope. For further information on FYMCA’s e-learning program, visit