Low Pro Pen Pals 💌Because sometimes the best friendships begin with a letter. Would you or your child like to connect with someone else in the CanPKU+ Amino Allies community? Low Pro Pen Pals helps people and families connected to rare metabolic disorders meet someone who may understand a little more about the unusual foods, routines, celebrations, challenges and everyday experiences that can come with rare. Whether you're hoping to make a new friend, share experiences, celebrate milestones or simply brighten someone's mailbox, Low Pro Pen Pals is about building community one letter at a time. Sign Up for Low Pro Pen Pals
Who can join?
Low Pro Pen Pals is open to members of our Amino Allies community, including people and families connected to PKU, HCU, MSUD, Urea Cycle Disorders, Tyrosinemia and other inherited metabolic disorders. Siblings, parents and other family members may also be interested in connecting with someone who shares a similar relationship to rare. A Different Kind of ConnectionOnline groups and social media make it possible to connect quickly, but there is still something pretty special about receiving something in the mail that was sent just for you. A Pen Pal connection can be as simple as exchanging a postcard, drawing or occasional letter. Other Pen Pals may discover shared hobbies, favourite games, sports, books, pets or experiences and continue writing for years. For Kids & YouthMeet someone around your age who may understand things your school friends don't encounter every day. For AdultsRare doesn't stop at adulthood. Pen Pals can offer another way to connect with someone navigating their own rare journey. For SiblingsBrothers and sisters have their own connection to rare. Where possible, we can consider matching siblings with other siblings of a similar age. Across Our CommunityYou don't necessarily need to share the exact same diagnosis. Some participants may enjoy connecting with another member of the broader Amino Allies community. How Low Pro Pen Pals Works1
Tell us a little about the Pen Pal.
Complete our short registration form so we know who is looking for a Pen Pal and what kinds of connections may be a good fit. 2
Tell us what matters in a match.
We ask about things such as age, interests, connection to rare, diagnosis and location, as well as how flexible you are about each of those things. 3
We look for a possible connection.
CanPKU+ will do our best to identify a Pen Pal match based on the information provided and the people currently waiting for a match. 4
Once confirmed, it's time to write!
The information needed to correspond will be shared with the matched Pen Pal or household so the first letter can begin its journey. What Makes a Good Match?There is no single formula for friendship, so we don't expect every Pen Pal pair to look exactly alike. Depending on each participant's preferences and who is currently waiting, we may consider:
You can tell us which of these matter most to you. A preference does not guarantee a particular match, but it helps us understand what kind of connection you are hoping to make. Matching also depends on availability. Sometimes the right Pen Pal may be waiting already; other times it may take a little longer for a suitable match to join the program. What Do Pen Pals Write About?Anything you'd like! Your letters don't need to be about metabolic disorders at all. Introduce YourselfFavourite hobbies, pets, family, school, work, sports, music, games, books or what you like to do on weekends. Share Something FunSend a postcard, drawing, sticker, recipe idea, joke, puzzle or story about something you've been doing. Celebrate MilestonesBirthdays, accomplishments, first days of school, graduations, trips and everyday wins are more fun when someone else is cheering you on. Talk Rare, If You Want ToSometimes it is nice to write to someone who understands formula, special foods, appointments, bloodwork or just feeling a little different. But rare never has to be the whole conversation. Children, Families & PrivacyChildren and youth are welcome to participate, but a parent or guardian must register participants under 18 and consent to their participation. Because this is a traditional Pen Pal program, information needed for correspondence, including the Pen Pal's name and mailing address, will be shared with the matched Pen Pal or household once a match is confirmed. Parents and guardians are encouraged to remain involved in their child's Pen Pal correspondence in whatever way is appropriate for their age and family. CanPKU+ uses registration information to help administer the Low Pro Pen Pals program and identify potential matches. Frequently Asked QuestionsDo Pen Pals have to live with the same rare disorder?Not necessarily. Some participants strongly prefer someone with the same diagnosis, while others are happy to connect with someone elsewhere in the Amino Allies community. The registration form lets you tell us your preference. Can siblings participate?Yes. We recognize that siblings can have their own experience of rare. Where possible, we can consider matching a sibling with another Pen Pal who has a similar connection to rare. Does my Pen Pal need to live in my province?No. Some people may prefer a more local connection, while others are happy to send letters across Canada or potentially farther away. You can tell us your geographic preferences when you register. How quickly will I receive a match?Matching depends on who is registered and waiting at the time. We will do our best to find a suitable match based on age, interests, preferences and availability, but we cannot promise that the right match will be immediately available. What if the Pen Pal connection isn't working?That's okay. Not every match becomes a lasting friendship. Contact CanPKU+ if circumstances change or if you would like to discuss the Pen Pal match. Do we have to write about our rare disorder?Absolutely not. The shared connection to rare may help two people find each other, but what they talk about is entirely up to them. Pen Pals can bond over everything from hockey and horses to gaming, books, pets, music or favourite foods. Ready to Find a Pen Pal?Complete the Low Pro Pen Pals registration form and tell us a little about the person hoping to make a new connection. We'll use that information to look for a potential match within our growing Amino Allies community. Sign Up for Low Pro Pen PalsQuestions? Email info@canpku.org and use the subject line Low Pro Pen Pals. |
