Canadian Association for Porphyria @PorphyriaCanada
Providing information and support to Canadians with porphyria and their families since 2014. porphyriacanada.ca Canada Joined February 2022-
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@GlobalPorphyria @UnitedPorphAssc @Porphyria_Help @PorphyriaCanada @porphyria_news @rarediseaseday @rarediseaseuk @GeneticAll_UK @M4RareDiseases @BritishDermDocs @HealthySkin4Al @_BDNG @WeAreSfGH @Alnylam @RecordatiD @DiscMedicine @ClinuvelNews
Join us for Hope Jam 2024 on May 11th at the Tofield Hotel in Tofield, Alberta! The evening kicks off with a silent auction and meal at 5pm, followed by live music from Mozzi Halo starting at 9pm, all in support of The Canadian Association for Porphyria. Admission is just $15.
Get your porphyria merchandise in time for Global Porphyria Awareness Day!! 💜💜 #porphyria #porphyriacanada porphyriacanada.ca/shop
🐰🌷 Happy Easter from the Canadian Association For Porphyria! 🌷🐰 Wishing everyone a day filled with joy, love, and renewed hope. #porphyriacanada #porphyria
EPP PATIENT DAY ZOOM MEETING TODAY!! There is still time to register! Please join us on Sunday! If you would like to submit questions for the Q&A, please submit them today.
Make a difference with style! 💜Every purchase contributes to helping us create a positive impact. #porphyriacanada #porphyria #raredisease porphyriacanada.ca/shop
'@pinkshirtday is one of 16 events, charities and non-profit causes that are important to communities in BC, that are being amplified with the Northern Lights Display this month.
Porphyrias represent 8 of more than 6,000 rare diseases! While every disease is different, there are some things we have in common: ☑️Need for quicker diagnosis ☑️Access to specialist care ☑️Development, approval and access to new treatments #porphyria #RareDiseaseDay
This #RareDiseaseDay CSPA emphasizes our support of the National Rare Disease Drug Strategy that was announced by the Government of Canada in 2023. Learn more about our advocacy work for rare conditions here: ow.ly/t3Za50QFNk5
Tomorrow is #RareDiseaseDay! Join the Global Chain of Lights! 🌍 The rare disease community will unite to spread solidarity with monuments, offices, schools, and homes lighting up in the Rare Disease Day colours! Don't miss out on Feb 29, 7 PM local time! #LightUpForRare
We’ve shared 3 porphyria podcasts in 2023 and this was the first. Spotify: open.spotify.com/episode/3qSKEJ… Apple: podcasts.apple.com/gb/podcast/key… Soundcloud: soundcloud.com/user-109006120… Or find the podcast wherever you like to listen @UnitedPorphAssc @BPA_Porphyria @Porphyria_Help #porphyria
Get ready for landmark’s to be lit up near you. Global Porphyria Awareness Day May 18/24 - B.C. Legislature-B.C. Place-Vancouver Convention Centre- Olympic Arms of the Cauldron- Science World-Reconciliation Bridge Calgary May 19
Do you have one of the skin porphyrias & 15-20 minutes to spare? @dundeeuni wants to hear from you! Help improve care for #Porphyria by taking part in this important survey: dundee.onlinesurveys.ac.uk/living-with-cu… @UnitedPorphAssc @PorphyriaCanada @Porphyria_Help @porphyria_news please share!
“We want to give patients the confidence to speak up about their needs.” Check out BPA’s strategic lead Liz Gill talking about holistic care & porphyria in the latest issue of @RareRevolutionM! Read the full interview at ow.ly/4cY050PZ3np. #PorphyriaTogether #CareForRare
“We want to give patients the confidence to speak up about their needs.” Check out BPA’s strategic lead Liz Gill talking about holistic care & porphyria in the latest issue of @RareRevolutionM! Read the full interview at ow.ly/4cY050PZ3np. #PorphyriaTogether #CareForRare
Certain people with acute hepatic porphyria living in British Columbia may now get full coverage for Givlaari (givosiran) from BC PharmaCare. buff.ly/45lo5a6
Our thoughts are with everyone affected by the wildfires.💜 We know accessing your treatment and care team during this time it might not be easy if you have been evacuated. We are here to help. If you need support, please reach out to us at [email protected].
Cosentyx, an approved treatment for the skin condition psoriasis, also successfully treated porphyria cutanea tarda (PCT) in a woman, 65. buff.ly/3KFa2Uh #PorphyriaNews #PorphyriaAwareness #GeneticDisorder #LivingWithPorphyria #RareDisease
To foster deeper connections, columnist Claire Richmond focuses on building a community of porphyria patients and advocates. buff.ly/47AxufA #PorphyriaNews #PorphyriaAwareness #GeneticDisorder #LivingWithPorphyria #RareDisease
Looking forward to the session on #porphyria in the western hemisphere and everything on Patient Day!
Looking forward to the session on #porphyria in the western hemisphere and everything on Patient Day!
So far very few porphyria patients have participated in this worldwide study capturing the realities of living with a dermatology condition. from our friends at @IADPO. Help make sure #porphyria voices are included! Participate at globalskin.org/GRIDDStudy #GRIDDstudy
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NORD and #RareDisease advocates were at the Mississippi State Capitol for the bill signing by Governor @tatereeves establishing a Rare Disease Advisory Council in #Mississippi! Rare disease patients and experts now have a guaranteed means of educating state health policymakers.
Urgent Reminder: The #NotJustMySkin campaign wraps up on April 19th. Join us in advocating for the prioritization of skin health by signing the open letter at notjustmyskin.org. Show your support & help spread the word by sharing this post. #ActNow #SkinHealthAwareness
Regroupement québécois des maladies orphelines invites you to participate in a study on the needs, priorities, and concerns surrounding the use of digital health to improve the day-to-day management of rare diseases. Link to survey: udes.limesurvey.net/353668?lang=en
Medical laboratories play a key role in diagnosing and monitoring #porphyria. For Medical Laboratory Professionals week, we want to say thank you. We are so grateful for your contributions to our care 💜 #LabWeek2024 #porphyriaTogether
💡 Fundraising Top Tip #6: Education is key! Share our #Porphyria factsheet at your fundraising event to let people know how #Porphyria & #RareDisease affects our lives – and explain to them exactly where their donations are going: porphyria.org.uk/porphyria-fact… 📰 @GlobalPorphyria
@GlobalPorphyria @UnitedPorphAssc @Porphyria_Help @PorphyriaCanada @porphyria_news @rarediseaseday @rarediseaseuk @GeneticAll_UK @M4RareDiseases @BritishDermDocs @HealthySkin4Al @_BDNG @WeAreSfGH @Alnylam @RecordatiD @DiscMedicine @ClinuvelNews
We are proud to share this short film by student Samuel Morrison, who lives with EPP, highlighting the importance of raising awareness of #RareDisease: youtube.com/watch?v=KgskkX… Thank you for sharing your story Samuel! #CareForRare #ThinkRare #ThinkPorphyria #RareDiseaseDay
Porphyrias represent 8 of more than 6,000 rare diseases! While every disease is different, there are some things we have in common: ☑️Need for quicker diagnosis ☑️Access to specialist care ☑️Development, approval and access to new treatments #porphyria #RareDiseaseDay
Thank you to Dr. Bruce Wang for taking our #porphyria questions in today's livestream! The recording is now available in the Porphyria Together Facebook group. Check it out: ow.ly/stHR50QHvIq
#RareDiseaseDay 2024 is almost here and we're still thinking about this powerful #porphyria story at last year's Rare Disease Day at @NIH. Sharing our stories is an essential part of making change for #RareDisease 💜 youtube.com/watch?v=ixcS1J… #RDDNIH
Thank you so much @MidUlster_DC for helping us to raise awareness of #Porphyria this #RareDiseaseDay by lighting up in #PurpleForPorphyria!
Our Council buildings, @burnavontheatre, Cookstown, @hilloftheoneill, Dungannon, and the Bridewell, Magherafelt will light up purple tonight, Thursday 29 February in recognition of Rare Disease Day and the British Porphyria Association. Visit porphyria.org.uk for more info
Today is rare diseases day! I have variegate #porphyria as well as #SPMS. Anyone else?
#RareDiseaseDay 2024 is almost here and we're still thinking about this powerful #porphyria story at last year's Rare Disease Day at @NIH. Sharing our stories is an essential part of making change for #RareDisease 💜 youtube.com/watch?v=ixcS1J… #RDDNIH
Together #rare people would make the third largest country in the world. #rareDiseaseDay #Porphyria
Great presentation from one of the amazing #porphyria experts who sit s on our Scientific Advisory Board! We so lucky to have physicians like Dr. Balwani in the rare community.
Manisha Balwani, M.D., M.S., FACMG, of @IcahnMountSinai presents on the deployment of an #ArtificialIntelligence algorithm on electronic health records (#EHRs) to screen and identify pediatric patients for clinical care or enrollment in research. #RDDNIH
Like many other rare diseases, most types of #porphyria are genetic. PCT is the most common type of porphyria and the only kind that can be caused by illness or other environmental factors. Learn more about the types of porphyria at porphyria.org/about-united-p… #RareDiseaseDay
This whole thread captures so may of the challenges facing rare diseases like #porphyria. Thanks for sharing Ben💜 #RareDiseaseDay
#RareDiseaseDay🧵 #1 Brother & I have #porphyria, a genetic mutation in haeme synthesis that leaves us anaemic & unable to tolerate sunlight. Exposure to UV light—esp. in spring/summer, when the sun is most direct—can mean days of burning, blistering, neuropathic pain & malaise.
Unfortunately, for too many with #porphyria and other rare diseases, the path to diagnosis is a long one. That's why it's so important to #thinkrare! Learning more about diagnosing porphyria at: porphyria.org/about-united-p… #RareDiseaseDay
Look up at the sky! The #LightUpforRare chain of lights is spanning the globe for #RareDiseaseDay! 🟪🟩🟥🟦. #TeamRocket is honored to help shine a spotlight on the journeys of the 30 million Americans and 400 million people in the world living w/ a rare disease. @EmpireStateBldg
Today is Rare Disease Day! Don't forget to tag us in any Canadian #LightUpForRare photos! Check out the full list of Canadian illuminations here: raredisorders.ca/rare-disease-d… #RareDiseaseDay #Canada @rarediseaseday
A recap of Mackenzie at the US Capitol iN D.C. for #RareDiseaseWeek. She was able to not only tell her story with other Maryland constituents, but also speak directly with Sen. Van Hollen about legislative asks to drive change in the rare disease community! #CareAboutRare
CORD Rarity Award: @picardonhealth accepting his Healthcare and Media Award 👏🏼
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