@CdnXLHNetwork

Canadian XLH Network is a non-profit organization promoting awareness for X-Linked Hypophosphatemia (a rare genetic disorder affecting 1 in 20,000 Canadians)

[@CdnXLHNetwork @CdnXLHNetwork]

Burosumab (Crysvita) was added to⁠
the Quebec list of medications for treatment of X-linked hypophosphatemia under the category of “Médicament d’exception” ⁠
For more information visit https://t.co/HWGC2YcJ5H or contact your physician.

#xlinkedhypophosphatemia #xlh #quebec

[@CdnXLHNetwork @CdnXLHNetwork]

Great news for the XLH community in the EU.

[International XLH Alliance @AllianceXlh]

Today that the European Union has approved the self-administration of burosumab for the treatment of XLH. The approval means that some patients or carers may be suitable to administer burosumab themselves, at the recommendation of the treating physician. https://t.co/IH0Vw7lTwq

[CORD @raredisorders]

The 2021 Real-World Evidence & Outcomes-Based Agreements Working Group would like to invite you to participate in the Canadian Outcomes-Based Agreements Experience and Perceptions Survey.
https://t.co/tc8Q7L6nya

[@CdnXLHNetwork @CdnXLHNetwork]

04 - "I have personally experienced what a difference these support groups can make, and am so excited to see the Canadian XLH Support Group along with other groups starting in various countries to support fellow XLH families around the world." - Rachael Jones

[@CdnXLHNetwork @CdnXLHNetwork]

01 - Meet the Member: Rachael Jones of Colorado Springs, Colorado (USA) loves camping with her family, baking, dancing and writing. She especially loves writing children's stories, and is currently working on publishing a children's book she wrote about XLH.

[@CdnXLHNetwork @CdnXLHNetwork]

03- "But just as importantly, I found a community of fellow XLH’ers who are supportive, encouraging, and strong."

[CORD @raredisorders]

Thank you @ninatangri for speaking up on #Ontario govt concerns regarding federal price controls for new meds (👉 https://t.co/M11OtO9Qmb) that harm patients w #CysticFibrosis and other rare disorders #Canada4Rare #HESA #CdnPoli #CdnHealth 1/2

[@CdnXLHNetwork @CdnXLHNetwork]

Amazing story about an Ontario family and their struggle with XLH, please give it a read.

https://t.co/BuKKj0fjyn

[@CdnXLHNetwork @CdnXLHNetwork]

Just posted a photo https://t.co/caNcgDFGvX

[The XLH Network, Inc. @XLH_Network]

Next up as we continue the ABCs of XLH, is D: Dental Abscesses. For more XLH related dental information, check out our dental brochure: https://t.co/j7YJ5nFzQw

[Durhane Wong-Rieger @Durhane]

Pan-Canadian Rare Drug Program could END patient ODYSSEY for life-changing therapies

[@CdnXLHNetwork @CdnXLHNetwork]

Very informative webinar recording on the burden of XLH in adults.

⚠️This is truly affects so many aspects of life, most of which are unfortunately unrecognized.

Please share this and help us raise awareness. Adults with XLH need to be followed closely and treated accordingly

[International XLH Alliance @AllianceXlh]

Our webinar recording on the unrecognised burden of XLH in Adults is now available to watch here: https://t.co/HBVudag78F

[@CdnXLHNetwork @CdnXLHNetwork]

Well said @GiniaJo 👏🏼

This, unfortunately, is a current approach that needs a fundamental shift, and one of the many areas that we, as a community, can help affect change. It all starts with us sticking together and supporting each other. #XLH #XLHStrong

[@CdnXLHNetwork @CdnXLHNetwork]

Hello Canadian followers, please consider taking our (very very brief) survey.

We are working with local doctors to try to find an estimate of how many people are living with XLH across Canada — your input is crucial! Thank you so much.

#XLH

https://t.co/WQJ932B75R

[@CdnXLHNetwork @CdnXLHNetwork]

Advocating for ourselves and our families can take a toll on our mental health. #weareinthistogether #xlhcanadiannetwork #advocacy #mentalhealthawareness

[The XLH Network, Inc. @XLH_Network]

For today's Mental Health Month Wellness Wednesday post, we want to remind those of you that work so hard to advocate for families to take care of your needs, too!

[CORD @raredisorders]

PARTICIPANTS NEEDED FOR RESEARCH EXPLORING USEFULNESS OF A BRITISH GENETIC COUNSELLING QUESTIONNAIRE FOR CANADIAN FAMILIES AFFECTED BY GENETIC CONDITIONS. For more info about this study, or to volunteer as a participant, please contact Laura Redondo ([email protected])

[@CdnXLHNetwork @CdnXLHNetwork]

Please take a moment to fill out this survey. I think it’s especially relevant to those trying to access Crysvita or other high cost medications. #RareDiseases #XLH #Avocate #education #healthcare

[CORD @raredisorders]

This survey is being conducted to learn from Canadians their experiences accessing specialty drugs. In addition, we are asking opinions about how specialty drugs should be available in a National Pharmacare program. Link to survey: https://t.co/8d5LVI381d

[@CdnXLHNetwork @CdnXLHNetwork]

Please consider taking this survey. I think it’s especially relevant to those trying to access Crysvita, or other high cost medications. #xlh #raredisease #advocate #burosumab

[CORD @raredisorders]

This survey is being conducted by the Canadian to learn from Canadians their experiences accessing specialty drugs. In addition, we are asking opinions about how specialty drugs should be available in a National Pharmacare program. Link to survey: https://t.co/Nunkt5tBhz

[@CdnXLHNetwork @CdnXLHNetwork]

Cardiff University School of Medicine is looking for Canadian families affected by rare genetic conditions to participate in a study. Participants must be 18+

[CORD @raredisorders]

For more information about this study, or to volunteer as a participant, please contact Laura Redondo ([email protected]), student researcher, Cardiff University MSc in Genomic and Genetic Counselling, who will be supervised by Dr Marion McAllister