Successful advocacy for rare diseases

There are so many patients in advocacy groups worldwide who are full of energy, commitment and will to improve other people’s lives. Of these, the most unique group are those who fight for the rights of patients with rare diseases. Sometimes their voice struggles to break through among other, louder voices. People with rare diseases are often overlooked by the healthcare system, they are underdiagnosed and public awareness of these diseases is far from sufficient.

That is why we have made it our mission to support in every possible way those who are fighting for a better life for patients with rare diseases. How do we do this?

• We do it through scientific knowledge. We create research and reports to better understand patient situations and find appropriate approaches and procedures.

• We do it through patient advocacy. We support the pursuit of the best therapies and medical care, focusing on both the health and quality of life of patients.

• We do it through education. We give the leaders of patient organizations practical knowledge on patient advocacy – effective tools, procedures and best known solutions.

• We do it through training. We show physicians and nurses how to build strong relationships with patients and respond to their needs.

• We do it through collaboration. We discuss, exchange views and share experiences – with physicians, patient advocates, pharma representatives, stakeholders and anyone else who cares about patients with rare diseases.

Because we believe that rare means exceptional, not unimportant.