December 17, 2019
Germany – Advocacy of Rare Diseases & Plasma
On the occasion of IPAW (International Plasma Awareness Week) a parliamentary evening event took place in Berlin, Germany.
Political representatives met with delegates from health insurance companies, plasma centers, plasma industry and patient organisations to discuss the access to care and supply of treatments for patients with rare diseases, especially haemophilia and primary immunodeficiencies (PIDs). dsai was also in attendance and, in a short interview, we emphasized the importance of plasma donations and immunoglobulins for primary immunodeficiency patients. The need for nationwide coverage of specialised centers for children as well as for adults was also addressed.
“Forum rare diseases – Quo vadis biotherapeutics” was the title of another event in Berlin that dsai attended. We had a chance to present the patients’ perspective regarding early diagnosis and adequate treatment.
An important push towards better understanding of the importance of immunoglobulins was achieved in this event attended by doctors, health officials, policy and regulatory representatives as well as health insurances companies.