EU Commission issues four new fact sheets on transborder care for rare, low prevalence and complex diseases, June 8, 2026
Read more at this link on the EU Commission website
The Alliance for Pulmonary Hypertension participates in the Annual Board Meeting of the European Reference Center for Rare Respiratory Diseases (ERN-LUNG), in Paris, March 23-24, 2026
On 23–24 March 2026, the Alliance for Pulmonary Hypertension attended the Annual Board meeting of ERN-LUNG, the European Reference Network for Rare Respiratory Diseases, in Paris. The Alliance was represented by Louise Bouman, Board member of the organisation and member of the ERN-LUNG E-PAG (European Patient Advisory Group). The meeting brought together healthcare professionals, researchers,
Advancing pulmonary hypertension care at the ERN-Lung Annual Board meeting, Paris, March 24-25, 2025
The annual Board meeting of the ERN-LUNG – European Reference Network for rare respiratory diseases, took place in Paris on March 24-25, 2025, with over 100 participants, not only from the EU but also UK, US and Canada. Two European patient representatives, Pisana Ferrari and Hall Skaara, (2nd and 3rd from left in the cover
Launch of a new EURORDIS platform with resources to help plan and implement patient partnerships in healthcare networks
The newly launched EURORDIS Patient Partnership Hub brings together resources that facilitate patient-clinician collaboration within the European Reference Networks (ERNs) in one convenient location. From templates and best practice webinars to guides and factsheets, everything is available in a single place. Explore the Patient Partnership Hub at this link and watch the demo webinar here
Beyond Provision: A Multidimensional View of Access to Health Care for Rare Diseases, The Lancet Global Health, October 2024
Access to health care is a broad and complex topic that warrants a clearer definition. What does is actually mean? Is it simply the provision of health services and medicines? An article titled “Access in the rare diseases landscape”, published in The Lancet Global Health October 2024 edition, delves into the different aspects that define
“Patient Involvement in Guidelines”, a webinar organised by ERKNet and EURORDIS, featuring Matt Bolz-Johnson as speaker, April 22, 2024
Clinical practice guidelines provide essential recommendations for diagnosing and treating medical conditions. In the realm of pulmonary hypertension a groundbreaking milestone has been achieved with the inclusion of two patient representatives, Pisana Ferrari and Gergely Meszaros JD, MSc, as members of the dedicated task force and co-authors of the new guidelines jointly developed by the European Society of Cardiology and the European Respiratory
On Rare Disease Day 2024 “Pongo”, the mascot of the Greek Pulmonary Hypertension Association, visited schools in Loutraki to tell children about pulmonary hypertension
“Pongo” serves as the mascot of the Greek Pulmonary Hypertension Association. This elephant doll features a unique characteristic: a minuscule nostril that impedes its ability to breathe adequately, leading to its striking purple hue caused by oxygen deprivation. It was create to educate children to recognize a physical diversity that may not always be visible.
“Guide to developing a Patient Journey”, a structured approach to understand the natural progression of rare diseases and identify unmet needs, EURORDIS, European Rare Disease Organisation, March 2024
The “Guide to developing a Patient Journey”, published in Mars 2024 by EURORDIS, the European Rare Disease Organisation, provides step-by-step instructions, practical tips, and tools to aid patient representatives in developing Patient Journeys for their respective rare conditions. What are Patient Journeys? Patient Journeys represent an innovative approach aimed at understanding the natural progression of
Kick-off meeting of the EU Joint Action JARDIN on the integration of European Reference Networks (ERNs) into national health systems
The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. 24 ERNs are working on a range of thematic issues, including ERN-Lung, the European Reference Center for Rare Lung Diseases, which
The European Medicines Agency (EMA) has issued a call for patient representatives to join the Committee for Orphan Medicinal Products (COMP)
The European Commission has launched a call for expressions of interest to represent patients’ organisations in European Medicines Agency’s (EMA) Committee for Orphan Medicinal Products (COMP). This is a very important opportunity for patients to have a role in the approval of orphan medicinal products! The call aims to fill three positions nominated by the
A fresh booklet for those unfamiliar with European Reference Networks (ERNs) and their role in rare disease patient care, Novemebr 25, 2023
The Directorate-General for Health and Food Safety of the European Commission has just issued a new booklet on European Reference Networks (ERNs). European Reference Networks are virtual networks connecting healthcare providers, professionals and patient organisations across the European Union (EU) and Norway. The rationale behind their establishment is that no country alone has the knowledge
The Impact and Future of European Reference Networks (ERNs) discussed at a conference in Bilbao, Spain, on October 10-11, 2023
The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The first ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 EU
Insights from a panel discussion on aging with rare diseases, including pulmonary hypertension, at the World Orphan Drug Congress, Barcelona, November 2, 2023
The World Orphan Drug Congress is the largest and most established orphan drugs and rare diseases meeting of its kind across the globe. Its 14th annual edition took place in Barcelona, Spain, from October 30 to November 3, 2023. There were 1,500+attendees, 300 speakers and 80+exhibitors. On November 2 the President of AIPI Italian Pulmonary Hypertension
“A Friendship Story” a resource for children with pulmonary arterial hypertension by Serbian patient and author Danijela Pešić, with illustrations by Ivan Drajzl
On the occasion of Rare Disease Day 2022 EURORDIS, the European Rare Disease Organisation, in collaboration with its national alliance rare disease patient organisation partners, put together a “School toolkit” to explain living with a rare disease to children and teenagers. These resources were translated in over 20 languages. One of these resources “A Friendship
The EU is running a public consultation on a “European Disability Card” to make it easier for people with disabilities to access some services while travelling within the EU
The European Commission (EC) is working on a proposal for an EU Disability Card, to make it easier for people with disabilities to access some services while travelling within the EU. There is currently no mutual recognition of disability status between the EU Member States. This can cause difficulties for persons with disabilities travelling in the EU.
European Rare Disease Organisation, EURORDIS, “Black Pearl” annual awards, including for Best Photo, announced on February 21, 2023
Taking place in February to mark the occasion of Rare Disease Day, the EURORDIS (European Organisation for Rare Diseases) Black Pearl Awards celebrates the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives. The black pearl symbolises these unique individuals,
European Conference on Rare Diseases (ECRD), Brussels, May 15-16, 2024
The European Conference on Rare Disease is recognised globally as the largest, patient-led, rare disease policy-shaping event held in Europe. The 2024 edition will be held virtually and in person in Brussels, Belgium, from May 15 to 16. Read more about the conference at this link
European Conference on Rare Diseases (ECRD), Brussels, May 15-16, 2024 Read Post »
International Rare Disease Day, February 29, 2024
Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. Rare Disease Day was set up and is coordinated by EURORDIS, the European Organisation for Rare Diseases, and 65+ national alliance patient organisation partners. For the 2023 edition 600+ events were held worldwide in 106
International Rare Disease Day, February 29, 2024 Read Post »
Dates for the European Rare Disease Organisation, EURORDIS, Summer School for Patient Advocates 2023 now announced: June 19-23, 2023, Barcelona
The EURORDIS Summer School on Medicines Research & Development consists of a one week of face-to-face training, held in June in Barcelona. Free e-learning modules are also available on demand. The EURORDIS Summer School aims to provide rare disease patient advocates with the knowledge and skills needed to become experts in medicines research and development.
EURORDIS, the European Rare Disease Organisation, and EFPIA, the European Federation of Pharmaceutical Industries and Associations issue Joint Statement on how to improve patient access to medicines
The EURORDIS-EFPIA Joint Statement on proposals to improve patient access to medicines was published on June 15 2022. As the EURORDIS-EFPIA press release reads “This is the first time that EURORDIS-Rare Diseases Europe, as a patient organisation, has come together with the pharmaceutical industry’s European organisation in such a structured dialogue. Discussions focused on how