New York hosted a Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF) to discuss how addressing the challenges faced by this group of people.
We talk with the Spanish Federation of Rare Diseases (FEDER) to learn about the tasks they are performing to improve the quality of life of more than three million people in Spain who live with a rare disease, and to discover how Covid-19 has impacted them.
This international platform has been developed by non-profit organisations and allows participating in online discussion groups and communities to network with other patients.
Àlex Roca: "It’s not right that all the healthcare responsibility should fall on the parents of small children"
We spoke with Àlex Roca, Lluc’s father and promoter of Petits Superherois (Small Superheroes), an association of parents of children with centronuclear myopathies.
Flaminia Macchia: “Rare diseases are often ignored by public policies, the journey towards full inclusion is long”
On the occasion of Rare Disease Day, we interview the executive director of Rare Diseases International, a network of 76 member organisations representing rare disease patient groups in over 100 countries worldwide.
The importance of the associative movement and volunteering when dealing with these diseases.