The Alfa-Endo Charitable Programme

ABOUT THE ALFA-ENDO CHARITABLE PROGRAMME

Nearly two million children in Russia are living with endocrine diseases,[1] including diabetes.

In addition, 1.3 million children and teenagers are obese, with the risk of developing diabetes and other life-altering conditions.

With many health providers lacking the tools and funds to combat the growing problem, Russia’s Alfa-Group set out to create a programme that could kick start vital research to help increase diagnoses and look to improve the accessibility of healthcare for children and young people who need it.

Seeing the potential impact that the Alfa-Endo programme could have on future generations, CAF Russia got involved to provide advocacy and verification services, facilitating the delivery of the ground-breaking project.

FINDING A SOLUTION TO A PROBLEM

Established in 2014, the Alfa-Endo programme was set up to help children in remote areas who are living with type one diabetes.[2]

Funded by the Alfa-Group and a wide variety of other donors (mainly pharmaceutical companies) and partners[3], CAF Russia was brought in to implement the programme and ensure its success.

Using their research, CAF Russia developed a strategy that would help improve access to diagnostics and treatment for people in need.

Applying a collaborative approach, the team at CAF have managed to sign up 33 local councils onto the programme, while also working with leading federal specialists and public health experts to develop clinical guidelines, trainings and research.

The team at CAF also implement public events and activities aimed at raising awareness of the programme to attract co-funding and other resources.

The programme now funds vital research behind a range of conditions, including thyroid disorders (which affect 575,000 people) and more rare endocrine diseases[4] that are not currently funded by the state budget.

IMPACTING THE LIVES OF YOUNG PEOPLE AND THEIR FAMILIES

Since 2014, the programme has been growing from strength to strength.

Before the programme was set up, families had to cover the cost of gene testing performed for their children – the cost was about $1,000 and not all families were able to afford this.

Now, the range of tools that are available to patients include gene testing, as well as positron emission tomography (to detect form of hyperinsulinism before surgery), and mass spectrometry analysis (for inherited metabolic diseases) – all of which are not currently funded by the state budget. And the programme partners hope to extend their services to help treat more than 700 inherited severe metabolic pathologies.[5]

Thanks to new technologies that have been implemented, more than 470 children now have access to telemedicine tools that offer remote blood glucose monitoring and medical advice from experts in the field.

In addition, the programme grants access to scholarships, residency, PhD courses and participation in international professional meetings for at least 30 young post-graduate students.

In 2018, the team at CAF Russia developed a new medical-social collaboration to support children with diabetes from vulnerable families (single parent families, poverty, parent unemployment, etc.).

Further outcomes from the Alfa-Endo programme

4,200+ diagnosed patients

More than 1,000 tests are now being performed annually, with the total number of diagnosed patients surpassing 4,200.

47% meeting A1C level

The number of children meeting A1C level (indicating the desired level of glucose in the blood) targets has increased from 16% to 47%.

Patient educational programmes

The programme has developed patient educational programmes aimed at self-control of diabetes for parents and adolescents.

Counselling in 13 regions

Children and their parents have access to psychological counselling to improve well-being /overcome mental health issues from diabetes.

CAF RUSSIA AND THE GLOBAL ALLIANCE

CAF Russia is part of the CAF Global Alliance, a network of nine locally-led, independent organisations that work across six continents.

Over the last 25 years, the Global Alliance and its international presence has led to breakthroughs and social change that’s had a positive effect on the lives of millions of vulnerable and disadvantaged people and communities.

At its core, the Global Alliance works to help strengthen civil society worldwide as part of the Charities Aid Foundation, a champion for giving that works to help donors, companies and charities make a bigger impact.

CAF Global Alliance

By working with donors, the CAF Global Alliance has helped make a real difference to charities of all sizes around the world.

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[1] Russian Health Ministry July 2018.
[2] Type 1 diabetes is an insulin-dependent condition.
[3] Key partners include the Endocrinology Research Centre of the Ministry of Health of the Russian Federation, Healthcare Departments of the Russian regions and leading medical institutions.
[4] These include Klinefelter syndrome (27,345 diagnoses), Congenital hypothyroidism (6,570) and Turner Syndrome (5,430). Data taken from Russian Health Ministry.
[5] These include: amino acid disorders, carbohydrate disorders, urea cycle disorders, fatty acid oxidation defects, fat metabolism disorders, etc.

HELPING TO DRIVE LIFE-CHANGING MEDICAL CARE

By Eva Astreinidou