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Mom paying it forward Tackling Mudderella in support of Rare Disease Foundation Erin McPhee / North Shore News September 20, 2015 12:00 AM

North Vancouver's Allison Jones knows all too well the benefits of a supportive community.

A mom to a four-and-a-half year old with two rare conditions, Jones is grateful to her peers, other parents of children with special needs, whom she's come to know through her ongoing involvement with the Rare Disease Foundation's family and patient support programs.

That commitment to supporting others will no doubt come in handy when next Saturday, Sept. 26, Jones and her team of eight other women will tackle the Whistler Mudderella, a non-competitive, five to seven mile long, muddy, obstacle course designed by and geared primarily towards women.

"Our motto is: We start together, we finish together. So if we have to slow down, we slow down for a teammate, but we're going to finish together," says Jones, 43, a married mother of three boys. More than about finishing the gruelling course, Jones and her team have dedicated their participation to the Rare Disease Foundation and are using it as a means of raising funds and awareness. "Meeting the parents at the Rare Disease Foundation, I couldn't have gotten through a lot of it without their support. They've become almost like a second family.. .. All of the programs that they do for the families, I just want to keep it going. Anything we can do to help, I'm all over it," she says.
- See more at: http://www.nsnews.com/living/health-wellness/mom-paying-it-forward-1.2063690#sthash.7FUabDJ3.dpuf
OfflinePhoto of Isabel Jordan
February 10, 2017

Rare Disease Day Events Across Canada

Isabel JordanIn the news

The Rare Disease Foundation is excited to be hosting and partnering with a variety of organizations across Canada to bring Rare Disease Day events across the country. The theme of this year's International Rare Disease Day is 'Research' and we couldn't be more on board with the theme!


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December 15, 2016

HOT OFF the PRESS!

David CoxIn the news

Read our latest newsletter, released just in time for the Holiday Season!


OfflinePhoto of David Cox
November 15, 2016

WORLDSymposium Lysosomal Scientific Meeting

David CoxIn the news

13th Annual WORLD Symposium takes place February 13-17, 2017 in San Diego


The RARE IS EVERYWHERE book Kickstarter project is closing in on the deadline in just 8 days and we need a little more help!


OfflinePhoto of Isabel Jordan
October 28, 2016

Rare Is Everywhere

RARE IS EVERYWHERE is a children's book of genetically rare animals that inspires kids to embrace their own rare beauty. The author is generously donating proceeds of all future book sales to the Rare Disease Foundation. Please take a look and order a book, or two, or more! Celebrate diversity and help us by sharing in all of your networks!


Through the ESDC Consultations portal, the Government of Canada is consulting with Canadians between October 6 and November 4, 2016, to gather their thoughts on what is important to them and how they could benefit from additional support.


Novel discoveries funded by the Rare Disease Foundation and recently published in the journal Nucleic Acids Research appear poised to lead to potential new therapies to treat patients across a broad array of genetic diseases.


The Rare Disease Foundation is a collaborator in Child-Bright, the new $25 million Canadian research program for children with brain-based conditions and their families.


A key event in the rare disease calendar, the Cambridge International Rare Disease Summit brings together academia, healthcare, industry, business, patient support groups and more. It is a chance to build the future of rare diseases and establish best practice in research, treatment and care.


OfflinePhoto of David Cox
August 22, 2016

INFORIEL AOÛT 2016 RQMO

David CoxIn the news

Dans ce numéro :
- Faisons adopter un Cadre règlementaire pour les médicaments orphelins au Canada
- Les conférences, colloques et journées éducatives sur des maladies rares à l’automne 2016
- Campagne de dépistage de l’anémie falciforme


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OfflinePhoto of Isabel Jordan
February 10, 2017

Rare Disease Day Events Across Canada

Isabel JordanIn the news

The Rare Disease Foundation is excited to be hosting and partnering with a variety of organizations across Canada to bring Rare Disease Day events across the country. The theme of this year's International Rare Disease Day is 'Research' and we couldn't be more on board with the theme!


OfflinePhoto of David Cox
December 15, 2016

HOT OFF the PRESS!

David CoxIn the news

Read our latest newsletter, released just in time for the Holiday Season!


OfflinePhoto of David Cox
November 15, 2016

WORLDSymposium Lysosomal Scientific Meeting

David CoxIn the news

13th Annual WORLD Symposium takes place February 13-17, 2017 in San Diego


The RARE IS EVERYWHERE book Kickstarter project is closing in on the deadline in just 8 days and we need a little more help!


OfflinePhoto of Isabel Jordan
October 28, 2016

Rare Is Everywhere

RARE IS EVERYWHERE is a children's book of genetically rare animals that inspires kids to embrace their own rare beauty. The author is generously donating proceeds of all future book sales to the Rare Disease Foundation. Please take a look and order a book, or two, or more! Celebrate diversity and help us by sharing in all of your networks!


Through the ESDC Consultations portal, the Government of Canada is consulting with Canadians between October 6 and November 4, 2016, to gather their thoughts on what is important to them and how they could benefit from additional support.


Novel discoveries funded by the Rare Disease Foundation and recently published in the journal Nucleic Acids Research appear poised to lead to potential new therapies to treat patients across a broad array of genetic diseases.


The Rare Disease Foundation is a collaborator in Child-Bright, the new $25 million Canadian research program for children with brain-based conditions and their families.


A key event in the rare disease calendar, the Cambridge International Rare Disease Summit brings together academia, healthcare, industry, business, patient support groups and more. It is a chance to build the future of rare diseases and establish best practice in research, treatment and care.


OfflinePhoto of David Cox
August 22, 2016

INFORIEL AOÛT 2016 RQMO

David CoxIn the news

Dans ce numéro :
- Faisons adopter un Cadre règlementaire pour les médicaments orphelins au Canada
- Les conférences, colloques et journées éducatives sur des maladies rares à l’automne 2016
- Campagne de dépistage de l’anémie falciforme


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CTV National News: Helping connect the dots

CTV National News: Helping connect the dot

Avis Favaro February 28th 2014
Global network launches in Ottawa to help doctors and patients identify rare genetic disorders. explain.
OfflinePhoto of Isabel Jordan
February 10, 2017

Rare Disease Day Events Across Canada

Isabel JordanIn the news

The Rare Disease Foundation is excited to be hosting and partnering with a variety of organizations across Canada to bring Rare Disease Day events across the country. The theme of this year's International Rare Disease Day is 'Research' and we couldn't be more on board with the theme!


OfflinePhoto of David Cox
December 15, 2016

HOT OFF the PRESS!

David CoxIn the news

Read our latest newsletter, released just in time for the Holiday Season!


OfflinePhoto of David Cox
November 15, 2016

WORLDSymposium Lysosomal Scientific Meeting

David CoxIn the news

13th Annual WORLD Symposium takes place February 13-17, 2017 in San Diego


The RARE IS EVERYWHERE book Kickstarter project is closing in on the deadline in just 8 days and we need a little more help!


OfflinePhoto of Isabel Jordan
October 28, 2016

Rare Is Everywhere

RARE IS EVERYWHERE is a children's book of genetically rare animals that inspires kids to embrace their own rare beauty. The author is generously donating proceeds of all future book sales to the Rare Disease Foundation. Please take a look and order a book, or two, or more! Celebrate diversity and help us by sharing in all of your networks!


Through the ESDC Consultations portal, the Government of Canada is consulting with Canadians between October 6 and November 4, 2016, to gather their thoughts on what is important to them and how they could benefit from additional support.


Novel discoveries funded by the Rare Disease Foundation and recently published in the journal Nucleic Acids Research appear poised to lead to potential new therapies to treat patients across a broad array of genetic diseases.


The Rare Disease Foundation is a collaborator in Child-Bright, the new $25 million Canadian research program for children with brain-based conditions and their families.


A key event in the rare disease calendar, the Cambridge International Rare Disease Summit brings together academia, healthcare, industry, business, patient support groups and more. It is a chance to build the future of rare diseases and establish best practice in research, treatment and care.


OfflinePhoto of David Cox
August 22, 2016

INFORIEL AOÛT 2016 RQMO

David CoxIn the news

Dans ce numéro :
- Faisons adopter un Cadre règlementaire pour les médicaments orphelins au Canada
- Les conférences, colloques et journées éducatives sur des maladies rares à l’automne 2016
- Campagne de dépistage de l’anémie falciforme


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