Raresies Rule

Raresies Rule Raresies Rule is here
for you everyday
Rooted together in a
rare medical way
Around the world
we become one
With a rare disease
we hope to overcome.
7000+ rare diseases affect the population.

Awareness - Support - Understanding

Operating as usual

05/18/2021

THANK YOU BB BOTTLE! So excited I won this. I can't wait to share posts of me and my BB!! Do you want a BB too?!
#RAREsiesRule #BBBottle #SupportingRare #RareWarriors #rarediseaseadvocacy #awareness @bbbottlesandsome @yuyubottle @stuntmanstu @angiepoirier

Great bike ride, truly was. Did 8km, but the damn chain fell off. It was knotted, and thank you to the 2 guys who put it...
05/15/2021

Great bike ride, truly was. Did 8km, but the damn chain fell off. It was knotted, and thank you to the 2 guys who put it back on. Took a good 5 minutes, with mosquitoes lingering.... Anyhoo, all is goo 🤩🥰🦵💪
#RAREsiesRule #OllierWarrior #NeverGiveUp #ResearchSobreira #awareness #support
@cheohospital @stuntmanstu @myprecisionmed @melissalambtv

Great bike ride, truly was. Did 8km, but the damn chain fell off. It was knotted, and thank you to the 2 guys who put it back on. Took a good 5 minutes, with mosquitoes lingering.... Anyhoo, all is goo 🤩🥰🦵💪
#RAREsiesRule #OllierWarrior #NeverGiveUp #ResearchSobreira #awareness #support
@cheohospital @stuntmanstu @myprecisionmed @melissalambtv

A look at COVID-19 vaccinations in Canada on May 10, 2021
05/10/2021
A look at COVID-19 vaccinations in Canada on May 10, 2021

A look at COVID-19 vaccinations in Canada on May 10, 2021

The latest numbers on COVID-19 vaccinations in Canada as of 400 a:.m. ET on Monday May 10, 2021. In Canada, the provinces are reporting 265,509 new vaccinations administered for a total of 15,917,555 doses given. Nationwide, 1,248,931 people or 3.3 per cent of the population has been fully vaccinate...

Done, and voila, Saran Wrap a la Beauty, lol
05/08/2021

Done, and voila, Saran Wrap a la Beauty, lol

Done, and voila, Saran Wrap a la Beauty, lol

Saturday, Saturday!! Covering up my grair hair LOL, with Saran Wrap
05/08/2021

Saturday, Saturday!! Covering up my grair hair LOL, with Saran Wrap

Saturday, Saturday!! Covering up my grair hair LOL, with Saran Wrap

05/07/2021
All the way!!
05/05/2021

All the way!!

All the way!!

Yum! Lunch is served.
04/29/2021

Yum! Lunch is served.

Yum! Lunch is served.

Happy Tuesday. As it comes to an end, remember your day was a success, and YOU are of value!
04/27/2021

Happy Tuesday. As it comes to an end, remember your day was a success, and YOU are of value!

Happy Tuesday. As it comes to an end, remember your day was a success, and YOU are of value!

It's that time of year again, Spring cleaning! Going through your closet, finding that clothes you never really wear?! T...
04/12/2021

It's that time of year again, Spring cleaning! Going through your closet, finding that clothes you never really wear?! Throw it in a large garbage bag, tag it "RAREsies Rule", and put it aside for our 2nd Annual FUNDrive Fundraiser Frenzy! A collection date will be set, as soon as OPH approves it, and a drop off zone will also be available. Last year we raised just over $500, and we hope to surpass it this year. RAREsies Rule/Ollier's Disease Canada is proud to support and guide Ollier RAREsies globally. Raising funds for our Educational Scholarship Program! Keep Smiling!

It's that time of year again, Spring cleaning! Going through your closet, finding that clothes you never really wear?! Throw it in a large garbage bag, tag it "RAREsies Rule", and put it aside for our 2nd Annual FUNDrive Fundraiser Frenzy! A collection date will be set, as soon as OPH approves it, and a drop off zone will also be available. Last year we raised just over $500, and we hope to surpass it this year. RAREsies Rule/Ollier's Disease Canada is proud to support and guide Ollier RAREsies globally. Raising funds for our Educational Scholarship Program! Keep Smiling!

Use of Suture Tapes Versus Conventional Sutures for Arthroscopic Rotator Cuff Repairs: A Systematic Review and Meta-anal...
04/05/2021
Use of Suture Tapes Versus Conventional Sutures for Arthroscopic Rotator Cuff Repairs: A Systematic Review and Meta-analysis - Khalis Boksh, Aziz Haque, Ashwini Sharma, Pip Divall, Harvinder Singh, 2021

Use of Suture Tapes Versus Conventional Sutures for Arthroscopic Rotator Cuff Repairs: A Systematic Review and Meta-analysis - Khalis Boksh, Aziz Haque, Ashwini Sharma, Pip Divall, Harvinder Singh, 2021

Background:Various suture materials are available for arthroscopic rotator cuff repair. More recently, suture tapes have become popular as they are perceived to be easier to use with less soft tiss...

From RARE REVOLUTION MAGAZINE, I share this with you! Stay strong RAREsie Warriors, you RULE!#RAREsiesRule #support #awa...
03/28/2021

From RARE REVOLUTION MAGAZINE, I share this with you! Stay strong RAREsie Warriors, you RULE!
#RAREsiesRule #support #awareness #OllierWarriors #LeukimiaWarrior Stu Schwartz

(1 of 2) “I had childhood leukemia from the age of 5 to 9. I was going back and forth between hospitals and chemotherapies; I didn’t go to school. While I was sick, my mom ended up getting sick. She had a lot of heart issues from childhood, as long as I remember she had heart problems. When she got sick, me and my siblings ended up going into foster care. Me and my younger sister stayed together, and my two older brothers were together. At my foster home, they put me in a room for 30 days straight. I didn’t even come out to eat. We were getting mentally abused. When my mom got out of the hospital, she was still sick but she asked to get us back because of how mistreated we were. We moved to Centereach and I was allowed to go back to school. I had never gone to first, second or third grade, but when I was sick, my mom bought us the World Book Encyclopedias and I would read them and my older brothers would help me with the words. By fourth grade, I had read all of them. So, when I took the test for fourth grade, I ended up passing it so well, they wanted to put me in fifth grade. I graduated from Centereach High School in the top 10 percent. I got a scholarship for running out of LIU Southampton. During that time, I was thriving. I loved school, I did very well. I graduated with a business management degree. I worked at Target, opening stores and training other managers. I probably opened up 30-something stores. I was in Florida in 2004 when I got really sick. I went out for a run and a quarter-mile in, I couldn’t breathe. Something sucked all the oxygen from my lungs. We went to the hospital and they did a biopsy and they said I had lung cancer.”

03/25/2021

RAREsies Rule and Personalize My Medicine
HERE FOR YOU

This is adorable.
03/24/2021

This is adorable.

I’m not a bubble-wrap boy - storybook to help children understand ITP

I would like to thank Novartis for making this storybook about immune thrombocytopenia (ITP).

The book is endorsed in the United Kingdom by the ITP Support Association.

I’m not a bubble-wrap boy! can help children and adults alike to understand what it feels like to live with ITP and describes the different types of treatment by using simple descriptions and compelling storytelling.

The way in which ITP is explained may also help children living with ITP feel more at ease when talking to their healthcare team. It may help them in explaining their symptoms and discussing treatment options available to them. ITP can present in different ways; therefore, different parts of the story may resonate with different children and allow them to share how they feel.

If you have a child either directly affected by ITP or living with a family member or friend affected by the condition, hopefully this book will help them to understand it better and feel more open about discussing ITP when they need to.

To download a PDF copy of I’m not a bubble-wrap boy click herehttps://www.itpsupport.org.uk/images/downloads/ITP%20Children's%20Book%20PDF.pdf

I hope you enjoy reading I’m not a bubble-wrap boy!

Mervyn Morgan,

ITP Support Association

I am a huge fan of RARE Revolution Magazine! I had the honour of meeting Co-Founder Rebecca Stewart in San Diego in 2019...
03/20/2021
RARE Revolution Sign Language Awareness

I am a huge fan of RARE Revolution Magazine! I had the honour of meeting Co-Founder Rebecca Stewart in San Diego in 2019. We had such a great time.

Celebrating sign-language awareness week 2021 with the RARE Rev team

Some great news ! Our lovely geneticist Nara Sobreira, Asst Professor at John Hopkins is continuing her research into th...
03/18/2021
Thank you for supporting Ollier’s Disease Gift Fund | Johns Hopkins Secure eCommerce

Some great news !
Our lovely geneticist Nara Sobreira, Asst Professor at John Hopkins is continuing her research into the causes of Olliers disease and Maffucci syndrome.
Some people in the past have enquired if there is a charity or research project where they can raise money and/or donate funds to help our community. Nara has organised a just giving page at John Hopkins.
With Rare Disease Day, Feb 28th this weekend it’ll be great to raise awareness for these very challenging and life changing conditions - And raise/donate much needed and appreciated funds for these conditions.
Here’s a note from Nara below, followed by the just-giving link.
Thank you so much and hope you all have a lovely weekend 🙂🙏
Happy Rare disease Day !
“The donations will go towards research to identify the gene(s) associated with Ollier disease, Maffucci syndrome and related diseases characterized by multiple enchondromas. This information will hopefully lead to the development of treatment to improve the quality of life, minimize tumor growth, and reduce cancer risks for those affected.”
NARA SOBREIRA
https://makeagift.jhu.edu/form/Ollier

Signing in with your Johns Hopkins account will automatically fill in your name and address information in the next step of making your gift. Selecting Continue as Guest will allow you to make a gift without signing in to an existing Johns Hopkins account.

Proud to know Biba. She is dedicated, beautiful and loving mom.
03/12/2021

Proud to know Biba. She is dedicated, beautiful and loving mom.

In support of International Women's Day, GASCDO would like to introduce and feature many of the phenomenal women that help lead and grow this global organization.

Each of them bring a wealth of skills and endless passion to the sickle cell cause. All of them are leaders in their countries and we thank them all for their endless effort and leadership.

We've asked them each to share their thoughts about what it means to be a woman and an SCD advocate.

We continue with Biba Tinga, GASCDO Finance Chair.

As we tackle the many women's issues to achieve equity and well being for all, health care stands out as a top priority

For that, I am so proud and honoured to be part of this leading team of advocates moving the Sickle Cell cause forward globally.

I also want to acknowledge the struggles of all women dealing with the many challenges of living with Sickle Cell Disease.

We are stronger together, when we support one another, no matter where we live.

Today, on International Women’s Day, I honour you all! You are warriors!

Thank you Daphne & Peter for your donation! Every dollar helps and is one step closer to our goal. Educational Scholarsh...
03/12/2021
Peter & Daphne Meldrum donated $10.00 to RAREsies Rule Scholarship Frenzy

Thank you Daphne & Peter for your donation! Every dollar helps and is one step closer to our goal. Educational Scholarships, help secure the future of Ollier RAREsie Warriors.
#RAREsiesRule #support #awareness #EducationalScholarships #DonateToday

It's donation time! May it be $5, or $225, it all adds up at the end. We need your support. This is our first campaign for educational scholarships, I will admit it will take time, but why wait? Our first awardees, Angelina (Canada), and Bryce (US). Stay tuned as we support their journey. Warriors!

A huge thank you to Kristy Zavala! Kristy's son is a RAREsie Ollier Warrior. We agree that education is an important par...
03/10/2021
Kristy Zavala donated $50.00 to RAREsies Rule Scholarship Frenzy

A huge thank you to Kristy Zavala! Kristy's son is a RAREsie Ollier Warrior. We agree that education is an important part of our lives, as I am sure you do too. Please donate, help secure the future of these amazing Ollier Warriors. THANK YOU

It's donation time! May it be $5, or $225, it all adds up at the end. We need your support. This is our first campaign for educational scholarships, I will admit it will take time, but why wait? Our first awardees, Angelina (Canada), and Bryce (US). Stay tuned as we support their journey. Warriors!

Timeline Photos
03/08/2021

Timeline Photos

Register NOW for our #FREE webinar!!!
We have a great lineup of guest speakers at this year's virtual grantee symposium. Join us on March 16, 12pm ET, to learn about "Hiring on Autopilot: How to Prepare Yourself and People with Disabilities for AI Employment Practices."
Register: http://ow.ly/Ikyg50DEWTj

#AI #ArtificialIntelligence #2021KFgranteeSymposium #KesslerFoundation #KesslerChangesLives
Thank you: Microsoft, Debra Ruh, Atos

Mobile Uploads
03/03/2021

Mobile Uploads

#RAREsiesRule #RareDiseaseDay #StayStrong #KeepSmiling #donate #campaignforscholsrships
02/27/2021

#RAREsiesRule #RareDiseaseDay #StayStrong #KeepSmiling #donate #campaignforscholsrships

#RAREsiesRule #RareDiseaseDay #StayStrong #KeepSmiling #donate #campaignforscholsrships

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