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Alongside You at Rare Finds YVR Event

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DELTA, British Columbia, May 2, 2017 — On April 8th, 2017, the Rare Finds YVR: Feast for the Senses event took place. $111,000 was raised in support of the Rare Disease Foundation in its mission to help Canadians living with rare diseases. Andrew and Meg Neufeld, co-owners of the award-winning health agency, Alongside You, were in attendance.

“Life is full of challenges. Help me understand mine.” – Max

As Andrew and Meg stared at this quote during the gala, it made them ponder the question: How well do we, as Canadians, understand the needs of this crowd that has often been overlooked by the public?

Meg grew up with an identical twin sister with a rare form of dwarfism and profound hearing loss. From an early age, they knew they were rare: 1 of 7 in the world at the time. Through their journey as a family, their father co-founded the Rare Disease Foundation with friends and colleagues and set out to change the course of research and treatment for rare diseases

Throughout their professional lives, Meg and Andrew have been intimately involved in supporting families, many of whom struggle with health conditions, including rare diseases. As pleased as they are to be able to provide support to individuals and families through the health disciplines at Alongside You, they know that the work of the Rare Disease Foundation has the potential to change health outcomes for individuals with rare diseases, and greatly relieve stresses on their families by identifying rare conditions and developing treatments — a chance to impact the individuals and families much earlier on in life and be proactive against many of the stresses these families face.

This is why supporting the Rare Disease Foundation is so important to them — because their awareness of the impact isn’t just professional, it’s family.

In order to participate in the mission of furthering Rare Disease awareness, Alongside You was involved with the Rare Finds Gala in several profound ways. They have donated gift baskets of art supplies and classes at their studio — a safe and comfortable environment for anyone of any age, diagnosis, or ability to experiment with different art mediums. They have also donated a Birkman Assessment and coaching session package through Immerse Consulting, a subsidiary of Alongside You.

But that is only the tip of the iceberg. Alongside You is also a proud provider of a $3,500 Microgrant to the Rare Disease Foundation. The microgrant program provides a small amount of funding ($3,500) that must accomplish a specific research goal and directly improve patient care.

“The grant will go to researchers eager to solve problems for today’s patients in just 4 weeks’ time,” according to the Rare Disease Foundation.

This is why Alongside You, as a local business, believes that any small- to medium-sized businesses can make an immediate impact on finding cures for rare diseases. They sincerely hope that their story would encourage fellow small business owners to take action, and provide microgrants to support the wonderful things the Rare Disease Foundation is doing for millions of Canadians affected by rare disorders.

About Rare Disease Foundation

Founded in 2008, the Rare Disease Foundation is a registered charitable organization supporting rare disease research internationally, with a majority of that research taking place in Canada.

Their Vision and Mission is to revolutionize rare disease care through the creation of communities of patients, caregivers, healthcare providers, researchers and supporters working together to transform the lives of those living with rare disease.

About Alongside You

Alongside You is an award-winning, integrated health agency in the heart of Ladner, BC, and they serve a wide range of clientele in Ladner, Delta, Vancouver, Richmond, Surrey, Langley and surrounding areas. They provide accessible health care to anyone in their communities, because people matter.

If you would like more information about what Alongside You is doing in the community, please contact Andrew Neufeld at 604.283.7827 ext. 701, Meg Neufeld at ext. 703, or email them at info@alongsideyou.ca

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
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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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David CoxIn the news

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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
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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.


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Dans ce numéro :
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- Les conférences, colloques et journées éducatives sur des maladies rares à l’automne 2016
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CTV National News: Helping connect the dots

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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
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HOT OFF the PRESS!

David CoxIn the news

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


OfflinePhoto of David Cox
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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
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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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