 | Giving Tuesday Donations
Giving Tuesday ... Giving Wednesday, we aren't that picky! We understand that times are hard on everyone this year and truly appreciate those that gave on Giving Tuesday. We will leave the donation campaigne open until Dec 1st in order to hopefully make our goal of $2000.
This helps us achieve our goals of advocacy - including better access to formulas and treatments for our rares, better access to newborn screening to ensure all those with our rares are detected as soon as possible, and supporting those living with rares, including the PKU adults who were discharged from care before we knew that care was a lifelong treatment!!
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Getting INvolved:
Advocacy and Awareness: |
We did an email blast and asked our community to send us their "faces" so we could create and update a flyer about CanPKU+. It is important to us to use REAL faces of our community whenever we can. Check out the results to the right! |
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| A research group at The Hospital for Sick Children (SickKids) in Toronto is leading the development of two new reporting guidelines for pediatric clinical trials, SPIRIT-Children and CONSORT-Children, to improve transparency in the reporting of pediatric clinical trials. They are looking for TWO GROUPS to complete a Delphi study starting January 2024. These group would be working alongside the research team in an advisory/consultation capacity, and not as research participants. | Group ONE - family caregivers (e.g., parents, guardians) and young people living with Rare (ages 19-24) Follow THIS LINK to get more information Group TWO - youth living with Rare (ages 12-18) Follow THIS LINK to get more information For any questions please contact Ami (enrich.network@sickkids.ca) |
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Support: |
Join the U Crew It's all about U as an adult living with your rare. Do you have pkU? hcU? msUd or Ucds? JOIN THE U CREW! Looking for support with the following?
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Looking for more information.. Follow some of the links below to other areas of our website! Vous cherchez plus d'informations. Suivez certains des liens ci-dessous vers d'autres zones de notre site Web ! (if the same statement shows twice it is because your browser is translating) Certaines sections peuvent être traduites par Google. Nous nous excusons pour toute inexactitude. Nous avons besoin de plus de traducteurs. Si intéressé contactez francophone@canpku.org |
Can we accept donations? ABSOLUTELY. CanPKU+ relies on donations to help us achieve our goals for the community. Please click the image to the right to make a donation today! Thank you in advance for consider CanPKU+ as a worthy organization to receive your donation. Please note: As we are not a charity, we are unable to issue tax receipts for any donation made. |
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 | Upcoming Events évènements à venir QUEBEC CITY - MAY 7 mai VANCOUVER, BC - MAY 13 mai NEAR SASKATOON, SK - JUNE 2-3 juin |
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Canadian PKU and Allied Disorders Inc. is a non-profit association of volunteers, first organized in the Spring of 2008 based in Toronto, Ontario. We are dedicated to providing accurate news, information and support to families and professionals dealing with phenylketonuria (PKU) and similar, rare, inherited metabolic disorders. Our mission is to improve the lives of people with PKU and allied disorders and the lives of their families.
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We wish to thank all of those who make CanPKU work! There are many volunteers working to help this community. We thank all of them for their time and efforts! |
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JOIN US NOW Help Support Your Organization | Member management Members Only Section. Create your own profile to share with other members. Keep track of your account. |
Privacy Statement:
Please note that CanPKU+ maintains member/participant/registration information for its own use and does not rent, sell or otherwise provide any identifying information to outsiders.
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Click on Community Stories title above to be taken to some PKU Community Members who have shared their story. Want to share your story? Send it to newseditor@canpku.org No pictures to show |