Stories and interviews
-
Stories and interviews
ERN RITA HAE Patient Journey Now Available Online
New HAE Patient Journey available online on ERN RITA website.
Read the full article -
Stories and interviews
„For the first time without injections: an experience that changed my life“
My experience taking part in a clinical trial.
Read the full article -
Stories and interviews
„Together we can ensure that patient needs are acknowledged and taken into account“
Interview with Camelia Isaic about the activities of the Plasma Protein Users Working Group (PUPP)
Read the full article -
Stories and interviews
„Volunteering for a patient organisation can be a life-changing experience“
Interview with Maria Beekman-Kortekaas, Chairwoman of HAE The Netherlands.
Read the full article -
Stories and interviews
“The hurdles for patients who want to join a clinical trial in another country are huge”
Interview with Dr. Ingrid Klingmann on the EU Cross-border Clinical Trials Initiative (EU-X-CT).
Read the full article -
Stories and interviews
„My HAE diagnosis uncovered the same rare disease in the whole male line of our family.“
On HAE Day 2024, the Czech media published another HAE patient story
Read the full article -
Stories and interviews
Finding the bright side of bad things that impact us
It wasn't until I moved to the Czech Republic that my life changed for the better.
Read the full article -
Stories and interviews
HAE Junior patient organization celebrates its 4th anniversary
Interview with Camelia Isaic on the occasion of the fourth anniversary of the organization
Read the full article -
Stories and interviews
About 40% of blood plasma used to make plasma-derived medicines for European patients is given by US donors
Interview about the importance and future of plasma derived medicines in the EU
Read the full article -
Stories and interviews
What to do if you are not diagnosed yet, but have symptoms that could possibly be due to HAE?
Interview with doc. Pavlína Králíčková, Ph.D. from University Hospital Hradec Králové.
Read the full article -
Stories and interviews
The future of HAE patients is bright
Interview with Michal Rutkowski, HAEi Regional Patient Advocate
Read the full article -
Stories and interviews
Patients’ voice is heard also thanks to HAE Junior
Intreview with Ms. Kateřina Slabá, head of the Promotion of Patients´ Rights Unit of the Ministry of Health
Read the full article -
Stories and interviews
Patient organizations are the „voice of patients“
Interview with Tímea Piskáčková, NAPO Executive Director.
Read the full article -
Stories and interviews
Many positive developments took place in the area of HAE during the last decade
Interview with Tomáš Freiberger Ph.D., Lead Physician of the Genetic Laboratory, CKTCH, Brno
Read the full article -
Stories and interviews
HAE Patients in Ukraine Under War Conditions
What is it like to live with HAE in Ukraine during times of war?
Read the full article -
Stories and interviews
„A message to the young with HAE? Do not give in to the disease!“
The first symptom occurred was when I was two years old – it was in 1977.
Read the full article -
Stories and interviews
I finally broke free from the disease, which was burdening me
Finally I can live a normal, peaceful life.
Read the full article -
Stories and interviews
ERN-RITA facilitates virtual medical consultations with European experts
Interview with Malena Vetterli, Board Member of ERN-RITA.
Read the full article -
Stories and interviews
-
Stories and interviews
Life with HAE through a mother’s eyes
Supporting the development of my children's talents has returned the joy of life to our whole family - in spite of HAE diagnosis and…
Read the full article -
Stories and interviews
Chronic absentee with poor grades
Patient story illustrating the burden of HAE in relation to education.
Read the full article -
Stories and interviews
My painful adolescence with HAE
A patient testimonial about the experience of living with HAE as a teenager.
Read the full article -
Stories and interviews
The very first HAE symptom brought me to the operating table. Unnecessarily.
A patient story describing how the very first HAE symptom can lead to unnecessary surgery.
Read the full article -
Stories and interviews
Face to Face Against HAE
Growing up with HAE as experienced by one of the HAE juniors.
Read the full article