Report from EURORDIS membership meeting in Stockholm May 25th – May 27th
EURORDIS invited to a membership meeting in Stockholm and promised an event that «will provide an engaging and lively discussion on the road towards a holistic approach to addressing the needs of people living with a rare disease and ensuring their full inclusion in society».
Mariposa Journal – 2022 winter N.29
Dear Friends, Colleagues and Supporters, It is always a great pleasure to look back and see the ample accomplishments of the past year. From the previous, summer edition of Mariposa, you could learn about our efforts and success to celebrate the 10th anniversary of World
Mariposa Journal – 2021 summer N.26
Dear Friends, I am happy to share with you the Summer 2021 edition of Mariposa. As you might know this edition is solely dedicated to World PH Day events all over the world and provides a nice overview of what has been achieved on a
Mariposa Journal – 2020 winter N.25
Dear Friends, I am delighted to present the Winter 2020 edition of Mariposa. No one would have thought at the beginning of the year how special and challenging the coming days would be. On the 10th of March, the World Health Organization declared the COVID-19
PH awareness month 2020
PHA Europe and its members were (and are being) very busy in the PH awareness month, in November.
ECRD goes online
ECRD (European Conference for Rare Diseases) is the largest multi-stakeholder gathering in Europe for the rare disease community.
PHA Europe 2015 October
Big success for our Annual PH European Conference (APHEC) Seventy-two pulmonary hypertension patient leaders from 31 countries took part in the 2015 edition of the APHEC. The program started with our Annual General Assembly, with the elections for the new Boardand Auditors and the vote
International Rare Disease Day 2015 Policy event and “Black Pearl” Gala Dinner
International Rare Disease Day (RDD) is celebrated every year on the last day of February. This event was launched in 2008 by EURORDIS, the European Rare Disease Organization and has since gained increasing consensus, with thousands of RDD events organized in collaboration with patient associations
PHA Europe 2012 March
1.ONLY TWO WEEKS TO GO TO THE FIRST WORLDPULMONARY HYPERTENSION DAY! May 5 2012 will mark a very important milestone for the PH commu-nity worldwide with the first international PH day being organized bythe Spanish PH association ANHP. The event has received the endor-sement of