Knowing what we are up to

At AOP Orphan, we have been contributing to research on myeloproliferative neoplasms (MPNs) for many years.  On September 9th – the 9th Annual MPN Awareness Day – we especially want to help raising awareness of MPNs, since we believe that informing, connecting and advocating for those who are affected and involved is crucial for the well-being of patients.

"From the beginning, it was our priority to preserve all existing jobs and we have done just that. By developing innovative therapies and a broader territorial presence, we are convinced that we will continue to generate significant growth!"

“I wanted to experience the joy of living and have positive thoughts again. I found various means of helping myself and would like to share this experience with other people.”

Narcolepsy is a rare lifelong neurological disorder that affects the natural cycles of sleeping and waking. It is characterized by excessive sleepiness during the day. This rare disease affects 2–5 out of every 10,000 people. No cure of the disease is currently possible. Therefore the treatment concentrates on relieving the symptoms as far as possible.

"If you get diagnosed do not hide your head in the sand. Stay open, positive and keep up the hope for a cure. It is important to go on with regular life as long as possible, for example to continue working, meeting friends and family, having hobbies! Such non-medical treatments as regular exercising, physiotherapy, logotherapy and massage etc also have a positive impact!"

"The time taken to establish the correct diagnosis of chronic thromboembolic pulmonary hypertension is on average about 14 months. However, the disease process starts much earlier - at a time when nobody has any idea about pulmonary hypertension. I know of one case that took 30 years to turn into a manifested disease!"

"MPNs is a chronic haematological disease group caused by a stem-cell disorder."