On February 28th, we celebrated Rare Disease Day by re-launching #TakeActionPAH campaign site.
Since 2013, Health Canada has approved three new oral therapies for the treatment of PAH: Opsumit (macitentan), Adempas (riociguat), and Uptravi (selexipag). However, none of these treatments are accessible to PAH patients in Canada through public funding, with the exception of Opsumit, which is only funded in Quebec.
We believe that all pulmonary arterial hypertension (PAH) patients – no matter their financial situation, province of residence, or private insurance coverage – should have access to optimal treatment. Because PAH is a highly individualized disease, specialized PAH physicians require the flexibility to prescribe any Health Canada-approved treatment they believe will result in the best possible short and long-term outcomes for their patients.
We have joined forces with Scleroderma Canada, Fondation HTAPQ, and Sclérodermie Québec to advocate for publicly funded access to these new Health Canada-approved treatments so that PAH specialists are able to exercise their individual clinical judgment, which is essential to the proper treatment of PAH.
We need your help as we continue our fight for publically funded access to all approved PAH treatments.
for updates such as:
to learn more, send an email to your provincial representatives, and tweet at decision makers! All our tools have been updated, so if you’ve participated in this campaign in the past, we encourage you to #TakeActionPAH again.
We’re here to help! Contact us if you need additional information and support, particularly if you’re planning a meeting with your provincial representative (firstname.lastname@example.org
or 1-877-774-2226 x101).
We are also collecting stories from patients who are concerned about accessing optimal treatment for PAH. If you or a loved one living with PAH is currently unable to access Opsumit (macitentan), Adempas (riociguat), or Uptravi (selexipag), please contact our Executive Director, Jamie Myrah (email@example.com
or 1-877-774-2226 x101) to share your story.
Get Ready for World PH Day 2017!
Friday, May 5, 2017, marks the 6th annual World PH Day, a global event dedicated to raising awareness of PH and celebrating PHighters worldwide. Spring is right around the corner; we invite you to plan ahead and participate in this global #PHAwareness event. See below for ways you can get involved.
Help Us Paint Canada Purple
In recent years, PHA Canada has celebrated World PH Day with Paint Canada Purple
, an awareness campaign that illuminates monuments and landmarks across Canada in purple. Which monument would you like to see lit up this year? Now is the time to make a request for your favourite landmark to shine bright on May 5th
. Visit www.phacanada.ca/worldphday2017
for Paint Canada Purple
resources, including a list of potential monuments in communities across the country.
Organize a Special Events
is a great opportunity to raise awareness in your community with an educational activity or to celebrate periwinkle power with a special support group gathering. We have a limited amount of money available to support events that will benefit the PH community. We invite you to fill out a Seed Grant Request Form
as soon as possible. To discuss your ideas or obtain more information, please contact Jamie Myrah at firstname.lastname@example.org
or 1-877-774-2226 x101.
Order PH Educational Materials and Purchase PH Awareness Items
We have everything you need to make a big periwinkle splash for World PH Day! Visit our online store
to order free educational materials and purchase PH awareness swag. PHA Canada’s new PH awareness flag is also is available for our members to use at events or hoist in their communities. Contact our Communications and Engagement Manager, Mariane Bourcheix-Laporte, at email@example.com
to borrow one of our flags.
Save the Date: Eastern Regional PH Symposium!
Mark your calendars for our first Eastern Regional PH Symposium, which will take place October 13-14, 2017 at the Westin Prince Hotel in Toronto. Join us for Friday night for a special welcome reception and Saturday for a full day of educational sessions featuring medical experts and your PH peers. We are happy to announce that PHighters living in, or east of Manitoba (within Canada) will be eligible to apply for travel scholarships – stay tuned for more details.
More information on this event will be announced in the coming months, including further details on scholarships, registration, volunteer opportunities, and program updates. Stay up-to-date by joining the event on Facebook
or visiting our website
If you have any questions, are interested in getting involved, or have presentation topics to suggest, please contact our Executive Director, Jamie Myrah, at firstname.lastname@example.org
February has been a particularly busy month for us at PHA Canada! We have produced lots of new resources, which we are very excited to share with the community.
New & Improved New to PH Kits
We have given our New to PH
kits a much-needed update with new resources, developed in collaboration with the Canadian PH Professionals Network (CPHPN), up-to-date information, and a new look. The kits are now available in three versions:
- New to Pulmonary Arterial Hypertension (PAH)
- New to Chronic Thromboembolic Pulmonary Hypertension (CTEPH)
- New to Pediatric Pulmonary Arterial Hypertension (PAH)
The kits contain useful information to help new patients and caregivers acquaint themselves with PH, adjust to their new reality, get introduced to the PH Community, and learn more about the resources available through PHA Canada. Our New to PH
kits are distributed to newly diagnosed patients through PH clinics and can be ordered online
Electronic versions of the resources included in the kits can be downloaded on our website at www.phacanada.ca/electronic-materials
. Take a look at our new resource sheets:
Tips for Staying Active and Preventing Fatigue
Our Pediatrics Committee has also been busy developing a new resource for families of children with PH. Tips for Staying Active and Preventing Fatigue
features tips and tricks to help little PHighters live as normally as possible while conserving their energy. This new resource is accessible online at www.phacanada.ca/pediatrics
along with other useful tools for families.