CF Gordey is a family created patient advocacy organization who is working with families, healthcare, society and the state to improve quality of life of the individuals and their families living with DMD. They identify and address gaps in the medical and social care in the Duchenne field in Russia, and introduce systemic changes across the country. This September, they joined the World Duchenne Organization.
The CF Gordey organization is primarily a family team, attracting different specialists who agree to work on pro bono or contract basis. President Tatiana Gremiakova, MD, Ph.D., D.Med.Sci attended last year’s Duchenne Patient Academy in Athens. There, she learned about the World Duchenne Organization and their representatives from national patient organizations across the world.
“I understood that together means stronger, and we have to use existing experience and best practices to advance solutions. The Duchenne Patient Academy was a strong boost forward. With the World Duchenne Organization, we are equipped with resources in knowledge and information to improve the situation with DMD locally, and be more connected as global Duchenne community.”
The main goal of the organization is to improve the medical, rehabilitation, social and psychological care and awareness on Duchenne muscular dystrophy in Russia.
- Introducing best world practices of medical care, facilitating implementation of new treatments, and attracting clinical trials;
- Educating clinicians and families;
- Organizing symposiums and conferences for clinicians and schools for parents;
- Facilitate the organizing of the national medical registry in DMD, identifying individuals with DMD across Russia;
- Developing a program of conscious reproductive choice by initiating newborn screening and introducing a genetic check before pregnancy;
- Facilitate the opening of neuromuscular centers in Russia;
- Advocating to put DMD in the category of high-cost nosologies and provide state reimbursements for the treatment.
So far, the organization created a strong science base to educate clinicians and families. Next to setting up a closed Facebook group where she posts relevant quality translated materials for medical staff and parents in Russian. She also translated the updated Lancet 2018 Care Recommendations, and is preparing articles in medical magazines in DMD treatment and care.
Currently, Tatiana and her team are working to prepare the accreditation of Certified Duchenne Care Centers, cooperating with well-equipped medical organizations to introduce good rehabilitation practices. So far, 4 boys have received treatment. Another achievement is functional monitoring of check-ups for DMD patients in accordance with the best internationally certified practices. They are working on introducing new treatments into practice.
On October 6-7, CF Gordey organizes a DMD session at the Russian care professionals annual conference with international participation ‘Development of palliative care for adults and children’ in the Russian Hospice Care Professionals Association. This is the largest educational event in Russia for specialists providing care to adults and children with severe progressive and life-limiting diseases.
Next to this, they are conducting lessons of kindness in schools, and are consulting families. CF Gordey expands contacts with regional parents, identifying leaders among them to set up a strong network for knowledge-sharing. Here they are providing information to parents and clinicians on ongoing research and drug development.