Your child receiving a diagnosis of pulmonary hypertension can be life-altering. Once the initial shock of having a child diagnosed with a disease that most have never heard of fades, parents are left with the reality of living with PH. Although significant changes in lifestyle are often necessary to accommodate PH, most children continue to lead happy and fulfilling lives. PH parents continue to raise their families and can find ways to make day-to-day tasks a little easier while caring for their child. 

Resources and support make living with PH easier. PHA Canada’s Pediatrics Committee is currently developing resources to help families of children with PH. If you would like to connect with other PH families in Canada or would like to share ideas about resources that would be useful to your and other families, please contact us at


Information for Families of Children Living with PH

As a parent or family member, the more information you have, the more equipped you will be to advocate for your child in a variety of situations. Explore these resources to learn more about some of the issues and challenges that are unique to children living with PH and how you can help your family to deal with life with PH.

School Package

Resources in the School Package are designed to assist parents/guardians in the task of informing a school (or daycare or camp) about a child's needs and condition. 

Other Ressources


PHighters PHeelings... Kids Living with PH

We're excited to share two very special videos featuring PHenomenal young PHighters from across the country who tell us in their own words what it means to live with PH. In 2017, we put a call out for children living with PH to tell us about themselves and how they cope with the disease. In Parts 1 and 2 of "PHighters PHeelings... Kids Living with PH" these superheroes talk about their lives and hopes for the future, tell us how their families help take care of them, and share words of hope for other kids diagnosed with PH. Thank you to all the families who participated in this project and to PHA Canada’s Pediatrics Committee for the creation of this project. 

Connect with Other Families

Pulmonary hypertension is a scary and stressful disease and, as a parent caring for a child with PH, you may feel isolated in your fight. Connecting with other Canadian PH families can provide you with the support boost you need, whether you are beginning or at a new step of your PH journey.

PH Parents Network

If you are the parent or caregiver of a child/youth (under 18 years old) living with pulmonary hypertension (PH) in Canada, you are invited to join PHA Canada’s PH Parents Network. The PH Parents Network provides an opportunity to connect with other parents for peer support and information.

Pediatrics Committee

Every three months, a meeting is held between representatives of the PH Parents Network and PHA Canada’s Pediatrics Committee, which also includes pediatric PH medical experts and PHA Canada staff. The purpose of these working meetings is to collaborate on projects related to resource development and educational events. All members of the PH Parents Network are welcome to attend these meetings to provide input and represent the voice of the PH pediatric community.

Pediatrics Community and Research News

Access news articles featuring members of the Candian pediatrics PH community and information on current pediatrics PH research. 



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