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CLINUVEL

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 #porphyria canada porphyriacanada.ca/shop

🐰🌷 Happy Easter from the Canadian Association For Porphyria! 🌷🐰 Wishing everyone a day filled with joy, love, and renewed hope. #porphyria canada #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. #porphyria canada #porphyria #raredisease

porphyriacanada.ca/shop

'Pink Shirt Day 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
United Porphyrias Association British Porphyria Association American Porphyria Foundation #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? University of Dundee wants to hear from you!

Help improve care for #Porphyria by taking part in this important survey: dundee.onlinesurveys.ac.uk/living-with-cu…

United Porphyrias Association Canadian Association for Porphyria American Porphyria Foundation 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 RARE Revolution Magazine!

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!

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 GlobalSkin.

Help make sure #porphyria voices are included!

Participate at globalskin.org/GRIDDStudy

#GRIDDstudy