About PVRI

Frequently asked questions

Who can join PVRI?

PVRI is a global organisation and open to anyone with an active research and/or educational interest in pulmonary vascular disease and related fields.

Whether you are a pulmonary hypertension specialist, a pharmaceutical representative, a regulator, a patient or a care giver, joining our growing global network means you share a vision to reduce the global burden of pulmonary vascular disease within the next two decades.

Become a member here. 

How does PVRI make an impact on pulmonary vascular disease?

Our organisation facilitates the global research and development of medicines for the treatment of pulmonary hypertension and other PVD symptoms. We have established Regional and Specialist PVRI Task Forces all over the world to raise awareness of this disease and learn more about its causes, effects and how it can be treated.

What does a PVRI membership involve?

PVRI membership includes access to our live science webinar programme, reduced fees to our annual congress, access to our engage forum and much more.

View our full list of membership benefits.

Where do donations to PVRI go?

All donations to the PVRI are assigned to our efforts in raising awareness, emphasising education and increasing research into pulmonary vascular diseases to find a cure.

Do you host any networking events?

Each year, we organise two large scientific meetings on different continents for leading stakeholders in PH. These include academics and clinicians, pharmaceutical representatives and regulatory bodies. We also host frequent webinars where members can connect and network.

Can I get involved with PVRI as a patient or carer?

Yes, patients and carers can get involved as fundraisers for the PVRI. We welcome all ideas to help bring in more funding so we can achieve our mission. In addition, our Supporters section of the website includes information on PH, as well as recent news articles for patients and carers.

I am a patient or carer of someone with pulmonary hypertension. Can you give me medical advice?

The PVRI cannot provide medical advice to patients or carers. Please seek all advice from a qualified medical professional.

How can I stay up to date with PVRI?

Stay up to date with the PVRI by becoming a member or by signing up to receive news updates.

Can I submit an article to the PC Journal?

To submit an article to the PC journal and for submission guidelines, visit Sage Publishing.

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Patient Organisations

The PVRI has links with various patient-focused organisations in different parts of the world. If you have been diagnosed with the disease you may wish to access these organisations directly for support.

The PVRI and The Dinosaur Trust

One Shared Goal - Two organisations with patients at the heart of everything we do.

The values of The PVRI and The Dinosaur Trust are strongly aligned. For both of our organisations, the main aims are to improve patient care and to find new drugs and treatments for patients who suffer from pulmonary hypertension, with the vision of one day finding a cure.  

The Dinosaur Trust is a patient organisation, which is set up to raise funds that are dedicated for research into pulmonary hypertension. They work closely with the PVRI to ensure research projects have the necessary funding that will make a difference and ultimately achieve our shared goal. Through our website and social channels we hope to provide a supportive community.

 

Pulmonary Hypertension Association (PHA UK)

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The Pulmonary Hypertension Association (PHA UK) is the only charity in the UK dedicated to people with the rare disease, pulmonary hypertension (PH).

Information provided by PHA, UK:

Set up in 2000, PHA UK has grown to a membership of over 3,500. The PH community is like no other – a unique group of people committed to supporting each other and raising awareness of this serious condition in the hope of one day, finding a cure.

  • We support PH patients and their families to enjoy a better quality of life
  • We work closely with healthcare professionals to improve time to diagnosis and treatment
  • We lobby to ensure PH is on the political agenda
  • We provide research grants to individuals, hospitals and specialist PH centres to improve the way PH is treated and managed.
  • We organise our own training and provide educational grants to help healthcare professionals obtain the specialist skills required to treat people with PH
  • We undertake a wide range of media activity to raise awareness of pulmonary hypertension
  • We organise events for members with an emphasis on interaction, fun and education
  • We provide members with an engaging quarterly magazine, encouraging them to share their own PH stories and feel part of a community

As well as supporting people living with PH, we also work to raise awareness of the condition. Pulmonary hypertension can severely affect a patient’s quality of life, but the condition is not widely understood in the UK and can often be mistaken for high blood pressure.

This is where the PHA UK comes in. We are committed to helping raise awareness of the condition among the general public, healthcare professionals, policy makers, funders, and politicians, to help improve the lives of people living with PH.

For more information visit their website HERE

PHA Europe

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Information provided by PHA, Europe:

PHA Europe is the umbrella organisation for national associations of patients living with pulmonary hypertension (PH) in Europe. It was founded in Vienna, Austria, in 2003 and is registered as an international non profit organisation.

Over the years membership has grown steadily and currently stands at 39 patient associations from 33 countries: Austria, Belgium (2), Bosnia & Herzegovina, Belarus, Bulgaria (2), Czech Republic, Croatia, Denmark, Finland, France, Germany, Greece, Hungary, Israel, Ireland, Italy (2), Latvia, Lithuania, Netherlands, Norway, Poland, Portugal, Republic of Macedonia, Romania, Russia, Serbia, Slovakia, Slovenia, Spain (2), Sweden, Switzerland (2), Ukraine (2), Turkey.

For more information visit their website HERE

Pulmonary Hypertension Association, USA

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Information provided by PHA, USA:

From simple beginnings – four women who met around a kitchen table in Florida in 1991 – the Pulmonary Hypertension Association has evolved into an international community of over 16,000 pulmonary hypertension patients, caregivers, family members and healthcare professionals.

We are now the largest and oldest PH association in the world, and we are changing the history of an illness. In the 25 years since that first meeting, the number of FDA-approved PH treatments has grown from 0 to 14, PHA research programs have been supported by commitments of more than $17 million, and more than two dozen Pulmonary Hypertension Care Centers have completed PHA’s accreditation process.

PHA is a 501(c)(3) nonprofit organization that relies on donations to fund its many programs, including the nation’s largest PH patient and caregiver support group network, lifesaving early diagnosis awareness and education programs, specialty care resources, and research to find ways to prevent and cure PH.

We continue to work every day to end isolation, provide education, involve our constituents in everything we do, and find a cure for pulmonary hypertension.

For more information visit their website HERE