Natalia Maeva’s inspirational path from pulmonary arterial hypertension and double lung transplant to European Championship

Natalia Maeva, a dedicated pulmonary hypertension advocate and double lung transplant recipient, has accomplished an incredible milestone as part of the Bulgarian transplant team. Eight years after her life-saving operation, she won a gold medal in badminton at the European Transplant Sports Championship in Lisbon, Portugal, becoming the European champion in the 50-59 age category. […]

Natalia Maeva’s inspirational path from pulmonary arterial hypertension and double lung transplant to European Championship Read Post »

Award-winning singer, songwriter and speaker Chloe Temtchine, who is a former pulmonary hypertension patient and double lung transplant recipient, releases a new song dedicated to her donor

Chloe Temtchine is an award-winning singer, songwriter, speaker, and the creator of “Super Brave,” an interview series that features both kids and adults who are living with a chronic illness. Her dedication to the cause includes “The Chloe Temtchine Foundation” (TCTF) which supports those living with pulmonary arterial hypertension and other serious conditions. Through TCTF,

Award-winning singer, songwriter and speaker Chloe Temtchine, who is a former pulmonary hypertension patient and double lung transplant recipient, releases a new song dedicated to her donor Read Post »

Interesting news! Recent research suggests that Italian musical genius Antonio Vivaldi suffered from pulmonary hypertension!

A recent study suggests that Italian composer Antonio Vivaldi, known for his musical genius, may have suffered from pulmonary hypertension. The study was led by the esteemed Italian oncologist, and accomplished musician, Prof. Giuseppe Gullo, and was published in Studi Vivaldiani, the annual journal of the Istituto Italiano Antonio Vivaldi (founded in 1947), which has

Interesting news! Recent research suggests that Italian musical genius Antonio Vivaldi suffered from pulmonary hypertension! Read Post »

NEW! Patient booklet on lung transplant by the Italian Pulmonary Hypertension Association AIPI now directly translatable in 40 languages on this platform! Check it out!

The patient booklet on lung transplant by AIPI, Italian Pulmonary Hypertension publication “Guida al Trapianto di polmoni” has been adapted and translated into English by Pisana Ferrari, President of AIPI. You can now translate the entire booklet directly from here using the orange button at the bottom of the page: 40 languages are currently available

NEW! Patient booklet on lung transplant by the Italian Pulmonary Hypertension Association AIPI now directly translatable in 40 languages on this platform! Check it out! Read Post »

Anne-Marie Amilhat, one of the world’s longest-living heart-lung transplant recipients (36 years!) was among the 11,000 people who carried the Olympic flame from Athens to Paris

Anne-Marie Amilhat, who is one of the world’s longest-living heart-lung transplant recipients (36 years post surgery!) was among the 11,000 people who carried the Olympic flame from Athens to Paris. On May 17th Anne-Marie carried the torch between Toulouse and Auch. The news was reported in the April 2024 edition of the French pulmonary hypertension

Anne-Marie Amilhat, one of the world’s longest-living heart-lung transplant recipients (36 years!) was among the 11,000 people who carried the Olympic flame from Athens to Paris Read Post »

Former pulmonary arterial hypertension patient shares her transplant journey and stresses the importance of education, Pulmonary Hypertension News, May 16 2024

Anna Jeter is an artist and writer living in Excelsior, Minnesota. She was diagnosed with pulmonary arterial hypertension in 1999 at the age of 4 and received a lifesaving heart-lung transplant in 2018. In an article published recently in Pulmonary Hypertension News, Anna encourages other pulmonary arterial hypertension patients to conduct thorough research and familiarize

Former pulmonary arterial hypertension patient shares her transplant journey and stresses the importance of education, Pulmonary Hypertension News, May 16 2024 Read Post »

The remarkable journey of two individuals with hand transplants, Theo Kelz and Vasyly Rohovyy, testifies to the huge progress made in the field in past decades

Two exceptional people feature in this photo: on the left Mr. Theo Kelz, the first patient to have a hand transplant in Austria in the year 2000, and on the right Mr Vasyly Rohovyy, who had both hands transplanted in Vienna in 2006.  The photo was taken under the portrait of Professor Raimond Margraiter, the

The remarkable journey of two individuals with hand transplants, Theo Kelz and Vasyly Rohovyy, testifies to the huge progress made in the field in past decades Read Post »

Colleen Brunetti’s book “Defining the new normal: A guide to becoming more than your diagnosis”, now available on Kindle for free!

Colleen Brunetti started her career as a teacher, but after her pulmonary hypertension diagnosis was forced to leave this field. She began a journey to re-invent herself implementing a holistic lifestyle and went on to become a certified health coach. In her book “Defining the new normal: A guide to becoming more than your diagnosis”

Colleen Brunetti’s book “Defining the new normal: A guide to becoming more than your diagnosis”, now available on Kindle for free! Read Post »

“Exploring pulmonary hypertension with Kiki the Koala”, a new booklet to help children understand and come to terms with their pulmonary hypertension – by realising just how special they are

“Exploring PH with KiKi the Koala” has been written and designed by 22-year-old Maryam, who was inspired by her little sister Fatima’s experiences with pulmonary hypertension. The book is aimed at children aged around three to nine. Readers can follow KiKi’s journey through learning how to cope with pulmonary hypertension and learning just how special

“Exploring pulmonary hypertension with Kiki the Koala”, a new booklet to help children understand and come to terms with their pulmonary hypertension – by realising just how special they are Read Post »

“How your patient is really feeling: the emotional hinterland of a cardiac diagnosis”, European Heart Journal, 8 January 2024

The authors of this article, titled “How your patient is really feeling: the emotional hinterland of a cardiac diagnosis“, published on the European Heart Journal on January 8, 2024, focus on the impact of receiving and living with a cardiac disease diagnosis, and in particular to the psychosocial aspects, which, they say, continue to be underrepresented in

“How your patient is really feeling: the emotional hinterland of a cardiac diagnosis”, European Heart Journal, 8 January 2024 Read Post »

Ieva Plume Receives Prestigious Ombudsman Award for Advocacy in Support of People with Disabilities of the Republic of Latvia

In a ceremony held on December 5, 2023, Ieva Plume, Chairperson of the Latvian Pulmonary Hypertension Association and Board member at the Latvian Alliance of Rare Diseases, was honoured with the Annual Award for Supporting People with Disabilities by the Ombudsman of the Republic of Latvia. This distinguished accolade was presented in the category of

Ieva Plume Receives Prestigious Ombudsman Award for Advocacy in Support of People with Disabilities of the Republic of Latvia Read Post »

Unyielding Spirit: Rob van der Aa’s inspiring journey with hereditary pulmonary arterial hypertension

We would like to thank our friends and colleagues at the Dutch Pulmonary Hypertension Association for having shared with us the very touching story of Rob van der Aa. Rob is a remarkable individual who, regardless of the physical toll of pulmonary arterial hypertension, strives to contribute meaningfully to society, dedicating himself to both academic

Unyielding Spirit: Rob van der Aa’s inspiring journey with hereditary pulmonary arterial hypertension Read Post »

Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management

RHU DESTINATION 2024 is a hospital and university research funded by the French government. It is led by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Reference Centre, and coordinated by the Assistance Publique-Hôpitaux de Paris (Bicêtre Hospital). Partners include the University of Paris-Saclay, Inserm, Marie Lannelongue Hospital, as well as three private

Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management Read Post »

Embracing Life: Rob’s Journey with familial pulmonary arterial hypertension

This article was originally published in “Papillon”, the magazine of the Dutch Pulmonary Hypertension Association’s, in the first edition of 2023, at pages 8-9. The author is Anita Harte. We extend our heartfelt thanks to Rob for having shared his journey with us. Rob (39) has familial pulmonary arterial hypertension. He is a member of

Embracing Life: Rob’s Journey with familial pulmonary arterial hypertension Read Post »

Pulmonary hypertension advocate Gergely Meszaros speaks at the Association of Cardiovascular Nursing & Allied Professions (ACNAP)’s annual conference in Edinburgh

Gergely Meszaros, a pulmonary hypertension advocate and Project Manager at the European Reference Network for Rare Lung Diseases, ERN-LUNG, was invited to speak at the Association of Cardiovascular Nursing & Allied Professions (ACNAP) of the European Society of Cardiology Annual Congress in Edinburgh, UK, on June 23-24, 2023. Gergely’s talk was about the 2022 joint European Society

Pulmonary hypertension advocate Gergely Meszaros speaks at the Association of Cardiovascular Nursing & Allied Professions (ACNAP)’s annual conference in Edinburgh Read Post »

“From Diagnosis of CTEPH to Triumph: Rishabh’s Journey of Resilience and Restoration”, May 31, 2023

Author: Pisana Ferrari, May 25, 2023, based on interview Introduction In the past few decades, significant strides have been made in the field of chronic thromboembolic pulmonary hypertension (CTEPH), encompassing enhanced disease comprehension, innovative therapies and surgical advancements. However, living with CTEPH continues to pose physical, practical, emotional, and social challenges for patients, families, and

“From Diagnosis of CTEPH to Triumph: Rishabh’s Journey of Resilience and Restoration”, May 31, 2023 Read Post »

A Reunion of Gratitude and Friendship: Six Long-term Lung Transplant Recipients Reconnect and Celebrate at Countryside Retreat

From left: Monica, 12 years post double lung transplant; Pisana, 21 years; Samantha, 19 years; Meri, 18 years; Alessandro, 20 years; Veronica, 19 years. In the middle stands Erna, a remarkable woman who provided unwavering support to us and our families during our time in Vienna, both before and after our life-changing surgeries. All of

A Reunion of Gratitude and Friendship: Six Long-term Lung Transplant Recipients Reconnect and Celebrate at Countryside Retreat Read Post »

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient”

Salvador Calderón, a patient affected by Pulmonary Hypertension and a volunteer with the Foundation against Pulmonary Hypertension in Spain, has released his third book, titled “The Expert and Informed Patient.” This compelling narrative portrays the journey of a patient through all stages of pulmonary hypertension, highlighting the constant struggle to improve the quality of life

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient” Read Post »

The French, Swiss and German pulmonary hypertension associations joint meeting in Freiburg im Breisgau, April 22, 2023

The German, French and Swiss pulmonary hypertension associations held a joint meeting in Freiburg im Breisgau on April 22, 2023. An information stand was set up by ph e.v., the German pulmonary hypertension association, organiser of the meeting, on the square where the market which is held every Saturday morning, near the cathedral. Our brochures,

The French, Swiss and German pulmonary hypertension associations joint meeting in Freiburg im Breisgau, April 22, 2023 Read Post »

“The value of learning how to live in the moment with pulmonary hypertension”, by Jen Cueva, Pulmonary Hypertension News, March 29, 2023

Jen Cueva is both a pulmonary hypertension patient and a nurse by training, which gives her unique insights into the condition and on how it affects day to day life. Writing for the latest edition of Pulmonary Hypertension News, she explains how living in the present moment has done wonders for her well-being. Instead of

“The value of learning how to live in the moment with pulmonary hypertension”, by Jen Cueva, Pulmonary Hypertension News, March 29, 2023 Read Post »

TRANSLATE »
Scroll to Top