28 FEBRUARY - WORLD RARE DISEASES DAY

We work hard daily to help seriously ill children and young people. We try to help every young patient, regardless of their diagnosis. However, the road to treatment and recovery is often even harder for patients with rare diseases than for those with more common diagnoses.

Expensive therapies, limited access to specialists, and a lack of essential medicines are just some of the difficulties faced by our young rare disease patients. Even when approved treatment protocols are available, they are unsuccessful due to limited access to tools, medicines, and experience.

Orphan diseases are rare. They are often genetic diseases that affect fewer than one in 2,000 people. Most of these diagnoses manifest themselves in early childhood and require lifelong treatment, specialised medical care, and expensive prescription drug therapy.

For 10 years, the Public Union "Orphan Diseases of Ukraine" has defended patients' rights and legitimate interests. Founded on 1 August 2014, it was the first and still the only organisation in Ukraine uniting rare disease patient communities. The Union's initiatives include:

• Training in psychological support for patients and parents;
• Provision of portable inhalers for continuous medication administration;
• The "Intensive Weekend" programme for children and their families;
• The "Hospital to Hospital" project - the distribution of expensive medicines between medical institutions.

Learn more about the organisation's activities at https://rare.org.ua/projects. We urge you to support patient initiatives and pay attention to the problems of patients with rare diseases. Every donation is a chance for a longer and better quality of life for those who fight for it every day!