Ontario NDP MPP Bhutila Karpoche is pushing for action on rare diseases with her private member's bill. This petition calls for a provincial strategy to support rare disease patients' needs. Sign & read more here: bhutilakarpoche.ca/rare-disease-s… #RareDisease #Ontario #Healthcare

The government can help #RareDisease patients. Reine explains how 👉 t.ly/8LdrO
#FightForOurLives #CdnPoli #CdnHealth

Join us to learn from Beth Potter and Pranesh Chakraborty on the role of patient registries in rare disease clinical trials. 🌟 Hosted by IMPaCT and RareKids-CAN 🌟 Don’t miss out, register today!  bit.ly/3We73ZA

Every #RareDisease patient has a story. This is Feneen’s, who has Erythromelalgia 👉 t.ly/fOT9_
#FightForOurLives #CdnPoli #CdnHealth

Today is #UndiagnosedDay ! 🔦
Many people with #rarediseases in Canada are still without a diagnosis, navigating through medical, financial, and emotional challenges. CRDN is committed to comprehensive care and research, from diagnosis to support. #RareDiseaseAwareness

“I would like to see the federal and provincial governments work together to create change” says Amy, a #RareDisease advocate with Thalassemia Major.

Watch her interview 👉 t.ly/0RylC
#FightForOurLives #CdnPoli #CdnHealth

We need systemic change.” Alexis, advocate with musculocontractural Ehlers-Danlos syndrome, explains how government can help #RareDisease patients 👉 t.ly/MpPv6

#FightForOurLives #CdnPoli #CdnHealth

How can Canada better support patients with #RareDiseases ?

Alanna (Where Are My Pillows), a rare disease advocate with autoimmune encephalitis, shares her thoughts 👉 t.ly/tu8SJ
#FightForOurLives #CdnHealth #CdnPoli

We’re excited to launch a new interview series featuring #RareDisease patients. Their powerful stories shed light on the urgent need for improved rare disease care in

Canada. Stay tuned and join the convo ➡️ fightforourlives.ca

#FightForOurLives #CdnHealth #CdnPoli

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

Okotoks, Alta., family faces limited options as two young children battle rare genetic disorder. Reported by Bill Macfarlane CTV News Calgary
#Canada4Rare

calgary.ctvnews.ca/okotoks-alta-f…

📢Join Durhane Wong-Rieger President and CEO of CORD, at the
Bamberg Health North America Rare Diseases Summit 2024. She'll discuss 'Smart Access Reforms for Orphan Drugs' #NARDS

Don't wait! Reserve your discounted spot today 👉bamberghealth.com/event/north-am…

With just 13 day to go, we are excited to highlight Durhane Wong-Rieger, President, CEO & Chair, CORD & RDI's presentation: 'Challenges of diagnosing and treating rare diseases in adult patients'!✨

Register as a group to save here: tinyurl.com/ytf27dud

Join us this #RareDiseaseDay to shed light on the struggles of those waiting for medicines and treatments that could save or significantly improve their lives.

To learn more, dive deeper into the issue with our 2021 report: lifesciencesontario.ca/wp-content/upl….

The first edition of our monthly newsletter Rare Insights is out!

We are thrilled to bring you:
✅ latest updates and news
✅ events and opportunities
✅ insights from the rare disease community in Canada and beyond

Sign up here :
lnkd.in/g3CAqC4a #CRDN #RareInsights

📢Join Durhane Wong-Rieger President and CEO of CORD, at the Bamberg Health North America Rare Diseases Summit 2024. She'll discuss 'Smart Access Reforms for Orphan Drugs' #NARDS

Don't wait! Reserve your discounted spot today 👉 bamberghealth.com/event/north-am…

📢 Metastatic/advanced cancer patient or caregiver in Canada? Colorectal Cancer Resource & Action Network needs your input for a pan-tumor biomarker survey!

Please help us ensure the patient voice is heard by filling out the survey here before April 26th 2024: surveymonkey.com/r/TJDJ77R

📢Durhane Wong-Rieger will be speaking at the World Orphan Drug Congress USA
in Boston on April 23 to 25. Register now for a discounted rate!

Register here: terrapinn.com/template/live/…

Proud to announce that the Bayshore Foundation in partnership Bayshore HealthCare has donated $5,000 to CORD to aid individuals in Canada affected by rare diseases. #RareDisease #Canada4Rare #Advocacy

Press Release: raredisorders.ca/donation-2/

Meet Sylvie Tress🌟, a beacon of strength and rare disease advocate. Her journey of late diagnosis and intervention has been devastating. To learn more about Sylvie, watch her story: youtube.com/watch?v=X5bebU…
#RareDisease #CRDN #RareLivesSharedStrength #Canada4Rare #Empowerment