Family Physician, Oxalosis & Hyperoxaluria Foundation Canadian Ambassador
Ottawa, Ontario
Joined September 2014
- Tweets130
- Following108
- Followers32
- Likes234
Dr Jennifer Adams retweeted
The Alberta COVID-19 Pandemic Data Review Task Force report was created with bias, and promotes misinformation.
@cma_docs endorses the concerns of @Albertadoctors. We cannot afford to promote more distrust in science and evidence-based medicine.
The CMA endorses @Albertadoctors concerns about the Alberta COVID-19 Pandemic Data Review Task Force report. This report promotes misinformation and risks undermining trust in medical and scientific communities.
Our statement ⬇️
cma.ca/about-us/what-we-do/p…
Dr Jennifer Adams retweeted
📣 Six provinces, including Ontario, have now signed agreements with the federal government to improve access to life-changing drugs for #RareDiseases. Ontario alone will receive $535 million over three years, marking a step forward for patients, families, and caregivers.
The Governments of Canada and Ontario announced $535 million over three years to make treatments more accessible and affordable for residents of Ontario living with a rare disease: ow.ly/Ig7n50UMEtT
ALT Improving access to drugs for rare diseases
Dr Jennifer Adams retweeted
Fellow rare disease organisations, @rarediseasesint needs our help! ✊
Join their coalition calling for a World Health Assembly (WHA) Resolution on Rare Diseases to be adopted in May.
Learn more and register now 🤝 rarediseasesinternational.or…
ALT "End stigma and discrimination for persons living with a rare disease" written in bold font surrounded by an abstract border of RDI colours. #Resolution4Rare
Dr Jennifer Adams retweeted
Canada is the ONLY developed country without a national strategy for #RareDiseases, affecting 3M Canadians. It's time for federal leaders to step up by creating a strategy that improves care, research, & access to therapies
Full Letter👉 bit.ly/3PyLNt6
Dr Jennifer Adams retweeted
On Friday, the Government of Canada and the province of Saskatchewan signed the National Strategy for Drugs for Rare Diseases agreement, committing over $40 million to improve access to new and existing drugs for rare diseases.
Learn more: canada.ca/en/health-canada/n…
Dr Jennifer Adams retweeted
Discover our largest #RareBarometer survey to date!
With insights from over 13,300 participants impacted by more than 1,900 rare diseases across 104 countries, find out how to leverage this invaluable resource to maximise its impact in your work.
➡️ go.eurordis.org/k3zXxG
ALT Webinar "Diagnosis Survey Results: How to use them in your advocacy work!" 30 January, 2:30pm-4:30pm CET Register now Features an image of a hiker on the top of a mountain with their walking canes raised in the air in triumph.
Dr Jennifer Adams retweeted
Did you know? 💡Using exome sequencing (ES) as a first-line test for suspected rare genetic conditions can improve the diagnostic journey.
Read about the new study by the @C4RCanada SOLVE Health Economics team, with contributions from many CRDN members on exome sequencing. 👇
Exome sequencing (ES) as a first-line test for suspected rare genetic diseases increases diagnostic yield, shortens time-to-diagnosis, and reduces testing costs. Our study underscores the benefits of early ES. @UofCr4kids @C4RCanada doi.org/10.1007/s40258-024-0…
Dr Jennifer Adams retweeted
🚀 Kick off 2025 with our January edition of Rare Insights! As we step into this new year, CRDN is excited to share updates driving progress in the rare disease community.
mailchi.mp/1fbff0a65ad0/welc…
📢 Check your inbox. Not a subscriber yet? Sign up here: canadianrdn.ca/newsletter-si…
I wish we had this training opportunity and level of support in Canada for rare disease advocates. @CanadianRDN and @raredisorders how can we make this happen?
Tomorrow is the launch of #RDW2024!
💡 Why is Rare Disease Week more critical than ever?
Hear from previous attendees about the impact the training had on their work and what that means for this year’s cohort: go.eurordis.org/Tljhdk
ALT Rare Disease Week 2023 participants.
Dr Jennifer Adams retweeted
Only 2 days left to register! ⏰
Join @rarediseaseday on 13 November at 2:00 PM CET for insights from a global panel of experts who will share valuable strategies for engaging healthcare professionals in the your #RareDiseaseDay campaign actions.
👉 go.eurordis.org/MSEQkY
ALT "Reminder" with a ringing bell icon Healthcare Professionals Webinar Join our panel of global experts to discover ways of engaging healthcare professionals and advocating for those living with rare diseases. Wednesday 13 November, 2pm CET
Dr Jennifer Adams retweeted
Upcoming webinar
Canadian Collaboration for Child Health: Efficiency and Excellence in the Ethics Review of Research (CHEER)
Right-Sizing Health Systems for Kids through Research Excellence
📅November 12, 2024
🕚12:00 pm ET
tinyurl.com/3sz7bvwa
ALT Canadian Collaboration for Child Health: Efficiency and Excellence in the Ethics Review of Research (CHEER) Right-Sizing Health Systems for Kids through Research Excellence
Dr Jennifer Adams retweeted
#CSPC2024 - Pre-Conference Virtual Short Talks
Creating a Health Research System that Promotes Patient Partnership
Presented By: Dr. Jillian Banfield @CIHR_IG
👉tinyurl.com/bddx98fu
🕛12:00 pm - 1:30 pm EST
📅Nov 12, 2024
ALT CSPC Pre-Conference Virtual Short Talks – Tuesday
Dr Jennifer Adams retweeted
Don’t miss your chance to join our demonstration webinar on the new Patient Partnership Hub and discover everything this newly created knowledge hub can do!
🗓️ 15 November
⏰ 12:15pm CET
Register now! 👉 go.eurordis.org/LvIAL3
ALT Patient Partnership Hub Demonstration Learn how to make the most of our newly created knowledge hub. With Nora Lazaro, ERN and Healthcare Patient Engagement Manager
Dr Jennifer Adams retweeted
To mark the second anniversary of Rare Disease Moonshot, our Board Member Graham Slater will be participating in a debate, hosted by @euronews, on the future of rare disease treatment options.
Register now to watch live!
🗓️ 12 November
⏰ 15:30pm CET
👉 go.eurordis.org/dEW2Pt
ALT Innovating for Impact: Shaping the future of rare disease treatment November 12, 2024 With the support of Rare Disease Moonshot
Dr Jennifer Adams retweeted
Living with a rare disease can significantly impact a person’s identity, as society constantly conflates who they are with their condition.
Join us in exploring this topic further with our expert panel:
🗓️ 18 November
⏰ 14:30pm CET
➡️ go.eurordis.org/kKCIT9
ALT Mental Health Webinar: The impact of rare conditions on self-identity Features an illustration of people with jigsaw pieces inside their head. One person has the jigsaw completed and the other is fragmented.
Dr Jennifer Adams retweeted
We've just added the French agenda and other info to our website.
The last day to book your room at the Delta Hotel Montreal at the discounted rate for has been extended to Nov 8
Link to conference info: raredisorders.ca/events/upco…
Dr Jennifer Adams retweeted
November is here! As the days grow shorter, we’re shining a light on the progress and innovations that are helping our #RareDisease community thrive.
👉mailchi.mp/6d29bf77f141/welc…
📢 Don’t miss it! Check your inbox. Not a subscriber yet? Sign up here: canadianrdn.ca/newsletter-si…
Dr Jennifer Adams retweeted
In this #EurordisRareOnAir episode, host Julien Poulain speaks with Dr Miriam Wilms on the challenges rare disease families face while advocating for centralised care to improve outcomes for those with an #AnorectalMalformation.
🎧 Listen now: go.eurordis.org/RareOnAir
Dr Jennifer Adams retweeted
New recording on the hub! 📣
💻 The fundamentals of fundraising without a fundraiser
You will learn:
👉 An introduction to network mapping
👉 How to structure project plans
👉 How to quantify need and demonstrate impact
Find out more:
ow.ly/fRrk50TT8q9
Dr Jennifer Adams retweeted
Are you feeling inspired to get involved? 🙋 @ERDERA_org
Applications for #OpenAcademy2025 are still open until the end of this week! Hear more about why you should apply from our Open Academy Manager, Gemma Rodríguez Fabià!
➡️go.eurordis.org/Apply