Social entrepreneur´s profile:

From Rare Disease to COVID-19 Care

People with rare diseases have complex needs during normal times. Meeting those needs during a pandemic that is stressing healthcare systems to their breaking point is just what Dorica does best.

Social Entrepreneur: Dorica Dan

Field: Providing direct health care and producing health care equipment

Needs for social innovation to have more impact: Business development and fundraisingLegal

Before and after Corona: From treating rare diseases to keeping common disease rare

The mission of the social enterprise before Corona:

Caring for people with rare diseases! Dorica is revolutionising the field of care for rare disease patients, transitioning from a rigid system to a collaborative approach. She is building a world in which all rare disease patients have equal and free access to diagnostic care, and are provided a tailored set of integrated services and therapies to increase their quality of life. 

She created a unique, patients-run, one-stop-shop in Europe, that offers holistic and crosscutting medical, social, and educational services to over 10 percent of the diagnosed patients in Romania.  

To reach 1 million diagnosed and undiagnosed patients spread across Romania, Dorica also introduced a new role for community nurses in case management for rare diseases as case responsible. Case managers are the central point of contact for patients in Centres of Expertise, connected with patients and case responsible, guiding them through the web of services, facilitating collaboration with and creating a holistic care pathway including medical, social, and counselling services. 

What changed with Corona?

Healthcare for those with rare diseases presents an especially unique challenge during the Coronavirus crisis. Like many of us, Dorica’s business model has had to adapt to keeping contact with patients from afar. For example, in-person therapy has needed to shift to online therapy. Since case managers are integral for patients and healthcare workers as a central point of contact, they are needed even more now to keep systems running efficiently and patients healthy.

The (biggest) challenge: Overloaded healthcare systems risk overlooking patients who require ongoing healthcare 

Dorica and her team serve people with rare diseases. This is crucial right now because, as healthcare systems become overburdened with COVID-19 patients, patients who rely on healthcare during non-pandemic times will face decreased service. We cannot forget that those who have been in need during non-pandemic times, need the same or even more support during this even more challenging periodeven if their need is not pandemic-related. 

Additionally, many rare disease patients require specific and highly technical medical equipment and supplies. Since many offices and suppliers have had to close during the pandemic, getting these supplies is an additional challenge. 

The goal of “The Romanian National Alliance for Rare Diseases” is to keep continuity of care for patients at the local and national levels.   

The solution: Doubling down and building on a proven model 

Dorica Dan is working to improve diagnostic capacity at the local level and to ensure continuity of care and well-being of patients with rare diseases at the national level 

Having reconfigured their therapy to be facilitated online, they are even building an online therapy platform for people affected by rare diseases.  

Additionally, they have been involved in increasing the testing capacity by allowing the local hospital to use their DNA extractor. Coordinating their geneticist to train hospital lab teams on genetic testing of COVID-19 provides additional relief to the health system in Romania. They have also donated a CPAP machine to the local hospital as well as protection equipment for the hospital (masks, gloves, and disinfectant alcohol) and they are organizing home care for 300 patients. 

Already Dorica’s organization is having huge impact on many people’s lives 

  • 70 children with rare diseases are continuing their therapies 

  • 70 families are being supported with psychological, social counselling and food packages  

  • 300 patients with rare diseases are being supported to organize their home care. 

  • They have also increased capacity for genetic testing in Salaj county. 

  • 21 employees have kept their jobs and involvement in organization activities which is important when many are facing loss of wages due to service closures. 

OutlookGoing forward, some of their digital solutions could be scaled up for people with chronic diseases, people with disabilities, elderly people, and to other countries.  

The personal biggest worry and hope:

Dorica is worried about getting the infection as she has family members that are in the high-risk category. She is also worried for patients with rare diseases in Romania as the first survey about the impact of COVID-19 on access to care in Romania showed them that 13 percent of patients have given up their treatment and 10,2 percent of those that responded until now have given up their treatment partially. The survey is still ongoing.
Dorica thinks that they can keep their faith and hope as they see local and international solidarity among different stakeholders. Online platforms became a way of living and they can see more sharing among people and more listening to others.