Soft Bones Canada - Hypophosphatasia 'HPP' Community

Happy Rare Disease Day!

Hypophosphatasia is a rare disease that is so often misdiagnosed. By spreading the word and bringing awareness, we can make the diagnosis path easier for others!

The average HPP patient waits YEARS for a proper diagnosis, but this doesn’t have to be the case.

Let us know how you are bringing awareness to HPP in the comments! Let’s help each other ❤️🦓

Only three days until Rare Disease Day! Make a plan to bring awareness and spread the news!

Rare Disease Day is coming up quick! Let us know how you plan to bring awareness in the comments!

Rare Disease Day is almost here! Let the countdown begin! 🗓️ You can help bring awareness to rare disease by checking out the free graphics at rare disease day.org.

Get all the details at raredisorders.ca!

We know just how rare this is! 😂

If you’re looking for someone who really knows what you’re going through, this the right place. All of us at SBC are directly impacted by HPP, so we really do understand! Shoot us a DM or email if you need to chat.

Happy New Year from Soft Bones Canada! We wish you a happy and healthy 2024. 🎆

Our January newsletters went out today, so be sure to check your inbox for those! If you didn’t receive one, send us a DM or an email at [email protected] and we’ll be sure to get a newsletter to you!

Merry Christmas and Happy New Year from all of us at Soft Bones Canada!

Thank you to all those who serve and have served to keep our country free. “We will remember them.”

Happy World HPP Day!

Tag us in your photos and posts and help spread the word of HPP!

One week until World HPP Day! Check out some of the fantastic social media graphics at so you can share on your personal accounts to show your support for HPP! Link in bio.

It’s almost here! HPP Awareness Day is October 30th and we’d love to heard how you plan to spread awareness and hope about HPP! Let us know in the comments!

Happy Thanksgiving weekend from all of us at Soft Bones Canada.

The CORD conference will be held in Calgary this year! There will be in person and virtual options available. This is a great opportunity to learn more about rare diseases and rare disease care in Canada, as well as to connect with others in the community. Check out https://www.raredisorders.ca/cord-fall-conference-2023/ to register.

Soft Bones Canada is looking for YOU! We are looking for volunteers of all ages, skills and personalities! Please contact us if you would like to help with our mission. Email us at [email protected] today!

That’s what we’re here for! We would love to help you with any questions or concerns and give you an understanding ear. All of us at SBC deal with HPP in a direct way, so we KNOW what you’re up against. 💜

If only it were that easy! 😂 # HPP

Having a rare disease is tough. You don’t often meet people who are like you and you can feel isolated and alone. That is what we’re here for! Drop us a DM or an email and we would love to chat. Rare doesn’t have to be lonely.

If you missed our latest webinar, you can watch the recording! Check it out at softbonescanada.ca.

With heavy hearts, Soft Bones Canada announces the passing of Dr. Philippe Crine on June 13, 2023. We offer our sincerest condolences to Dr. Crine's family. Dr. Crine's contributions to HPP research and to the development of drug therapy for our patients are unparalleled and have directly improved the quality of life of many HPP patients in Canada and across the world. His kind and warm presence within the HPP community in Canada will be deeply missed.

Dr. Philippe Crine was a member of Soft Bones Canada Scientific Advisory Board as well as a former professor in the Department of Biochemistry at the University of Montreal. Dr. Crine was a founder of Enobia Pharma where he served as Chief Scientific Officer and Vice President Research from 2003 until 2012. He is a co-inventor of asfotase alfa (now known as Strensiq) and was responsible for its preclinical development. After clinical trials the drug was bought by Alexion Pharmaceuticals and has become the only approved treatment for HPP. Soft Bones Canada will feel the loss of Dr Philippe Crine on the Scientific Advisory Board and his research in bone orphan diseases. The full obituary is posted in the comments below.

Happy Canada Day from your Soft Bones Canada team! 🍁

Don’t forget about our free webinar tonight on the Phycological effects of living with a rare bone disease! 7 PM EDT. Link in bio!

Don’t forget about our webinar on June 20 at 7 pm EDT with CARDS!

Check out the new promotional video and register for this free event! Link in bio.

Happy Victoria Day from all of us at Soft Bones Canada!

Tune in to our next webinar! On June 20, at 7 PM EDT, Jennifer Paulson, Dr Leanne Ward and Dr Cheryl Greenberg will be discussing the phycological effects of living with a rare bone disease. You don’t want to miss it! Register on the CARDS website, link in bio.

Fact Friday!

Exciting news!

The Government of Canada recognizes rare diseases and begins funding strategy. Link in bio.

We are recognizing the good work our friends at CORD have contributed to advancing access to therapies and quality care for rare disease patients and families!

We wish you all a fantastic Easter weekend from all of us at Soft Bones Canada!

HPP is featured in Maclean's this month! Take a look at the special interest section focussing on rare diseases in Canada. Some SBC regulars are featured, so be sure to check it out! Raising awareness for HPP and rare disease!!