Books about Rare
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HCU
(Do you know of any?)
MSUD
No Longer Not Allowed |
Details:Deals With: MSUD Audience: Educators, Teens, Adults, Parents, Medical Professionals Language: English Price: $20.00 CAD Amazon Link: |
About the BookAmy Gingrich saw her disease as a prison. She felt trapped by having to monitor everything she ate and limit physical activity. She didn’t like it, but she had learned to live with her genetic prison. Amy was born with MSUD (Maple Sugar Urine Disease), a metabolic disorder classified by the burned maple syrup smell in one’s urine, ear wax, and body sweat. MSUD is a disease in which a person cannot process protein normally. It can only be cured with a liver transplant. In No Longer Not Allowed, Gingrich shares her story of living with the disease and then undergoing a liver transplant at the age of twenty-one in January of 2006 at Pittsburgh Children’s Hospital. She tells about the hospital stays, the ups and downs of healing, subsequent health issues related to the transplant, and recovery. Gingrich also includes recipes and journal entries from her parents who provided unconditional support. No Longer Not Allowed narrates how, by the grace of God and the unselfish act of a donor family, Gingrich was given a second chance to live life to the fullest. About the Authorby Amy Gingrich |
A Fragile Heritage |
Details:Deals With: MSUD Audience: Educators, Teens, Adults, Parents, Medical Professionals Language: English Price: $ 16.45 USD |
About the BookCombining one family’s story with fascinating research on genetic disease, A Fragile Heritage traces the strands of heritage, faith, and mutation through generations and addresses questions about genetic mutations resulting from the overlapping ancestry of many Mennonites and Amish today. It also answers a deeper question: In a world of imperfection, how can we believe in a perfect God? About the Authorby Sheryl Leinbach |
Maple Syrup Urine Disease (MSUD): Informative guide for patients & families |
Details:Deals With: MSUD Audience: Educators, Teens, Adults, Parents, Medical Professionals Language: English Price: $10.00 CAD Amazon Link: |
About the BookExplore our detailed guide on Maple Syrup Urine Disease (MSUD). Learn about symptoms, diagnosis, treatment options, daily management, coping strategies, complications, prognosis, and available resources to support patients and families affected by MSUD. CanPKU+ review: Useful for families and newly affected readers seeking clear, empathetic guides. Potentially helpful for clinicians as supplemental reading but not a substitute for peer-reviewed clinical guidelines. Not ideal as a primary academic reference, given limited vetting and review. About the Authorby |
MAPLE SYRUP URINE DISEASE DIET COOKBOOK: An Expert Guide To Understanding, Planning, And Enjoying MSUD-Friendly Meals For Every Life Stage, With Nutritional Strategies And Delicious Recipes |
Details:Deals With: MSUD Audience: Educators, Teens, Adults, Parents, Cooks, Medical Professionals Language: English Price: $13.50 CAD Amazon Link: |
About the BookThe "Maple Syrup Urine Disease Diet Cookbook: With Expert Guidance" is a source of hope and practical advice for those dealing with the challenges of Maple Syrup Urine Disease (MSUD). This book is an invaluable resource for patients, caregivers, and healthcare professionals alike, from its incisive analysis of the condition's etiology, symptoms, and treatment choices to its thorough advice for creating a diet adapted to MSUD management. About the Authorby |
MSUD CookBook |
Details:Deals With: MSUD Audience: Teens, Adults, Parents, Cooks, Medical Professionals Language: English Price: $ 20.99 Amazon Link: |
About the BookThe MSUD Cookbook provides a comprehensive collection of delicious recipes carefully crafted to assist individuals with Maple Syrup Urine Disease (MSUD) in managing their dietary needs. This cookbook is designed to help MSUD patients incorporate nature's sweetness into every dish they prepare, while ensuring they are adhering to the specific dietary restrictions associated with their condition. With a wide range of mouth-watering recipes, this cookbook offers an enticing and enjoyable way for MSUD patients to savor the flavors of life. About the Authorby William A London |
Pursuing Gods Grace |
Details:Deals With: MSUD Audience: Educators, Teens, Adults, Parents, Medical Professionals Language: English Price: $ 17.84 CAD Kindle Unlimited: Free Amazon Link: |
About the BookHello, my name is Elizabeth Stone. I want to share with you my story about living with a rare metabolic disorder called Maple Syrup Urine Disease (MSUD). I discuss the highs and lows of living with a rare metabolic disorder while grasping for a sense of normalcy . Living with a metabolic disorder has not been easy. My family and I have had many challenges that we have had to overcome over the years leading up to my life-saving Liver Transplants in 2007 and 2024. About the Authorby Elizabeth Alison Stone |
PKU
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Details:Deals With: PKU Audience: , Educators, Parents, Medical Professionals Language: English Price: $32.83 CAD Amazon Link: |
About the BookOut of nearly four million who get newborn screening each year, about 12,000 babies are diagnosed with a "rare disease" in the US alone. Jennifer J. Brown's daughters were two of them. It was in their genes. About the Author |
 |
Details:Deals With: PKU and Maternal PKU Audience: Educators, Teens, Adults, Parents, Medical Professionals Language: English Price: $23.00 CAD Amazon Link: |
About the BookFor most of my life, I was told that because of my rare, genetic, metabolic disease that I would never have a child of my own. That I could never experience pregnancy and carry a baby to term. I never gave up on my dream and thanks to advancements in modern medicine & research into rare diseases as well as an extensive medical team, About the Author |
Everybody Has Something |
Details:Deals With: All Rares, Specifically PKU Audience: Toddlers, Children, Educators Language: English Price: $26.95 CAD Amazon Link: |
About the Book"Why me?" We've all heard the question—now here's the answer! Everybody Has Something clearly illustrates to children that we are all different from each other. It features real kids with real issues, from cavities to cancer. It’s about diversity and acceptance, from a child’s perspective. This book is for everybody—because Everybody Has Something (including PKU!). About the Authorby Margaret Domnick |
Penny the Penguin has PKU |
Details:Deals With: PKU Audience: Toddlers, Children Language: English Price: $18.92 CAD Amazon Link: |
About the BookPhenylketonuria (pronounced fee-nill-key-toe-NURR-ee-uh) or PKU is a rare, inherited metabolic disorder. Each year, approximately 1 in 14,000 newborn babies are diagnosed with PKU. If you have PKU, your body cannot break down, or metabolize, the essential amino acid, phenylalanine (Phe). Amino acids are the building blocks of protein. The primary treatment for PKU is a special metabolic formula and the restriction of foods high in Phe (protein), such as meats, cheeses, milk, bread and pasta. Life-long dietary compliance is a critical component for proper growth and development in children and quality of life in adults. We hope Penny The Penguin can help your child on this "diet for life" journey. About the Authorby Laurie Bernstein (Author), Joanna Helm |
The Adventures of Ruby Pricklebottom Book 1: Ruby Has PKU |
Details:Deals With: PKU Audience: Toddlers, Children Language: English Book Price: $26.18 CAD Kindle Price: $ 0 CAD Amazon Link: |
About the BookLearning to manage a special diet can be tricky for anyone of any age. It can be especially hard for kids. What is equally hard is being a parent of a child with dietary needs, trying to decide when to turn that huge responsibility over to the child. Ruby & Roscoe’s PKU Sidekick was created to help families begin the transition by providing a fun and engaging training tool for parents and children to work through together. Written in the style of a journal, this book allows children to fill in blanks and write down everything they’ll need to know in order to be successful at managing PKU. It’s packable size makes it a great tool for grandparents, babysitters, and teachers to utilize in communicating daily dietary intake with parents. About the Authorby Anna Marie Parker (Author), Brandon Keith Parker (Author) |
Ruby and Roscoe's PKU Sidekick |
Details:Deals With: PKU Audience: Toddlers, Children, Educators Language: English Price: $17.01 CAD Amazon Link: |
About the BookLearning to manage a special diet can be tricky for anyone of any age. It can be especially hard for kids. What is equally hard is being a parent of a child with dietary needs, trying to decide when to turn that huge responsibility over to the child. Ruby & Roscoe’s PKU Sidekick was created to help families begin the transition by providing a fun and engaging training tool for parents and children to work through together. Written in the style of a journal, this book allows children to fill in blanks and write down everything they’ll need to know in order to be successful at managing PKU. It’s packable size makes it a great tool for grandparents, babysitters, and teachers to utilize in communicating daily dietary intake with parents.
About the Authorby Anna Marie Parker |
A-Z with Frankie A PKU Friendly Learning Book |
Details:Deals With: PKU Audience: Children, Teens Language: English Price: $30.72 CAD Amazon Link: |
About the BookIs not your average learning book. Parents will love reading this book with their kids as we learn with Frankie all about the Fruit and Vegetables in this world along with their protein values and fun facts. Frankie was born with PKU which is a genetic metabolic disease that doesn't allow her body to process protein. This book encourages children to open a conversation about how incredible this world is that we live in, and how unique each and every one of us are. About the Authorby Kacie Foos |
Frankie's Paris A PKU Adventure |
Details:Deals With: PKU Audience: Children, Teens, Adults, Parents, Language: English Price: $20.73 CAD Amazon Link: |
About the Book"Frankie's Paris" is the third book in Frankie's travel series supporting the metabolic disease community. In this book we travel with our little adventurer Frankie who was born with PKU otherwise known as Phenylketonuria, to Paris, France. Join Frankie and her Mom as they learn all about this gorgeous city. From visiting the Eiffel Tower to shopping in Montmartre, this book encourages children to learn about History and to explore the wonderful world that we live in. Our hope with this series is that we can continue to encourage people to spread awareness for the PKU community, and open a conversation to the other metabolic diseases in our world. About the Authorby Kacie Foos |
Frankie's Maui A PKU Adventure |
Details:Deals With: PKU Audience: Children, Teens, Adults, Parents, Language: English Price: $26.41 CAD Amazon Link: |
About the Book"Frankie's Maui" is the fourth book in Frankie's travel series supporting the metabolic disease community. In this book we travel with our little adventurer Frankie who was born with PKU otherwise known as Phenylketonuria, to Maui. Join Frankie and her parents as they learn all about this beautiful island of the Pacific. From whale watching, snorkeling, and watching a sunrise from the top of a volcano, this book encourages children to learn about the Hawaiian culture, and to explore this wonderful world we live in. Our hope with this series is that we can continue to encourage people to spread awareness for the PKU community, and open a conversation to the other metabolic diseases in our world. About the Authorby Kacie Foos |
Happy Valentines Day Frankie |
Details:Deals With: PKU Audience: Children, Teens, Adults, Parents, Language: English Price: $28.36 CAD Amazon Link: |
About the BookJoin Frankie as she celebrates Valentines Day with her family. During a year of uncertainty, Frankie puts her best foot forward and reaches out virtually to friends around the world. Even being stuck at home, Frankie finds a way to share her love and kindness with friends and family. (Please join our efforts to help spread PKU awareness around the world with Frankie.)
About the Authorby Kacie Foos |
Frankie's Halloween A PKU Friendly Holiday |
Details:Deals With:PKU Audience: Children, Teens, Adults, Parents, Language: English Price: $17.29 CAD Amazon Link: |
About the BookJoin Frankie and her family as they celebrate Halloween together. From carving pumpkins, to haunted houses, to enjoying a warm bowl of pumpkin soup this book welcomes you to this family favorite holiday! Please join us in our efforts to help spread PKU awareness around the world with Frankie. About the Authorby Kacie Foos |
Happy Birthday Frankie |
Details:Deals With: PKU Audience: Children, Teens, Adults, Parents, Language: English Price: $20.73 CAD Amazon Link: |
About the BookIs the fifth book in a series for families and friends supporting the metabolic disease community. This book is a love letter to the families of children born with rare diseases. Join Frankie as she celebrates the precious gifts of life, love, and family on the most special of days, her birthday. About the Authorby Kacie Foos |
The PKU Paradox |
Details:Deals With: PKU Audience:, Educators, Teens, Adults, Parents, Medical Professionals Language: English Price: $39.95 CAD Amazon Link: |
About the BookIn a lifetime of practice, most physicians will never encounter a single case of PKU. Yet every physician in the industrialized world learns about the disease in medical school and, since the early 1960s, the newborn heel stick test for PKU has been mandatory in many countries. Diane B. Paul and Jeffrey P. Brosco’s beautifully written book explains this paradox. PKU (phenylketonuria) is a genetic disorder that causes severe cognitive impairment if it is not detected and treated with a strict and difficult diet. Programs to detect PKU and start treatment early are deservedly considered a public health success story. Some have traded on this success to urge expanded newborn screening, defend basic research in genetics, and confront proponents of genetic determinism. In this context, treatment for PKU is typically represented as a simple matter of adhering to a low-phenylalanine diet. In reality, the challenges of living with PKU are daunting. In this first general history of PKU, a historian and a pediatrician explore how a rare genetic disease became the object of an unprecedented system for routine testing. The PKU Paradox is informed by interviews with scientists, clinicians, policymakers, and individuals who live with the disease. The questions it raises touch on ongoing controversies about newborn screening and what happens to blood samples collected at birth. About the Authorby Diane B. Paul & Jeffrey P. |
Rosey Raccoon has PKU |
Details:Deals With: PKU Audience: Toddlers, Children, Educators, Parents, Medical Professionals Language: English Price: $24.95 CAD Amazon Link: |
About the BookRosey Raccoon, has a rare metabolic condition called Phenylketonuria otherwise known as PKU. This condition is lifelong and so far there is no cure. Follow Rosey through the book as she explains her condition. With easy to read explanations and colourful illustrations for young children. About the Authorby Danielle Freeman |
Robert Guthrie - The PKU Story: Crusade Against Mental Retardation |
Details:Deals With: PKU Audience:Educators, Teens, Adults, Parents, Medical Professionals Language: English Price: $28.58 CAD Amazon Link: |
About the BookAll newborns in the U.S. and in many parts of the world now have a couple of drops of blood drawn from their heels in order to test them for PKU and a host of other genetic disorders that can cause mental retardation or premature death if not treated immediately. This is the biography of the man best known for his development of newborn screening for PKU. Yet this was only one of his prodigious accomplishments. Tests were developed in Bob Guthrie's laboratory for more than 30 treatable disorders that cause mental retardation or death, giving the term "newborn screening" fresh meaning. He also waged a battle against lead poisoning long before the public or the medical community became concerned about this danger and was a member of the Physicians for Social Responsibility-an organization devoted to preventing nuclear war and o-posing nuclear weapons testing. About the Authorby Robert Guthrie |
Sheila: Unlocking The Treatment For PKU |
Details:Deals With: PKU Audience: Educators, Teens, Adults, Parents, Medical Professionals Language: English Price: $36.88 CAD Amazon Link: |
About the BookIn 1951, at two years of age, Sheila Jones was diagnosed with Phenylketonuria (PKU). With no treatment available, Sheila’s mother Mary persevered until she obtained help from three pioneering doctors at Birmingham Children’s Hospital. They worked tirelessly to prepare a special formula for Sheila making her the first person in the world to receive dietary treatment for PKU. In this new book to be published in October 2020 Anne tells the remarkable story of Sheila and her important legacy – the introduction of newborn screening and worldwide treatment for PKU. ‘ In 1971, twenty years after Sheila was diagnosed, newly qualified junior biochemist, Anne Green, began her scientific career at the same hospital where Sheila was first treated. Since then Anne’s career and Sheila’s story intertwined which led to Anne’s desire to find out more about Sheila’s life with her brothers and her courageous and tenacious mother. This book is the fulfilment of a career-long interest in PKU and newborn screening’. About the Authorby Anne Green |
My PKU Life |
Details:Deals With: PKU Audience: Teens, Adults, Parents Language: English Price: $19.63 CAD Amazon Link: |
About the BookTen years ago Carrie Hall started the labour of love that turned in to this book. She details the first 20 years of her life growing up in the 80's and 90's living with PKU, being teased at school, relating to friends, eating out, cheating on diet and several other issues PKUers and their families face.In the book you will find an innovative feature entitled "My 2 Cents" where Carrie asks the questions that every person with PKU and their parents ask. Carrie answers them, relating to her own experiences and also provides answers from other PKU teens, adults and parents of PKU children so the reader benefits from the experiences and opinions of several people.This book is in a one of a kind format worth reading. About the Authorby Carrie C. Hall |
Living With PKU |
Details:Deals With: PKU Audience: Teens, Adults Language: English Price: $23.99 CAD Amazon Link: |
About the BookLiving with PKU: A low protein life with Phenylketonuria is a new and valuable resource for adults and teens with Phenylketonuria (PKU), or for families new to the disorder. About the Authorby Pauline O'Connor |
PKU Pregnancy Journal |
Details:Deals With: PKU Audience: Educators, Teens, Adults, Parents, Maternal Language: English Price: $22.10 CAD Amazon Link: |
About the BookThis pregnancy journal is thoughtfully designed for moms-to-be with rare metabolic disorders. It features a recurring three-day food diary, self-care tips, guided mindful journaling, and built-in blood test tracking. Each page also includes a daily thought or motivational quote to offer support, guidance, and encouragement. Created to help future moms navigate the balance between strict dietary needs, managing anxiety, and the excitement of the journey ahead, this journal is a trusted companion for the path to motherhood. About the Authorby Maria Depenweiller |
PKU Coloring Book |
Details:Deals With: PKU Audience: Toddlers, Children, Teens Language: English Price: $13.91 CAD Amazon Link: |
About the BookPKU Coloring Book. Healthy Food For kids on PKU diet. Color and Learn is a fun and educational coloring book designed specifically for children with phenylketonuria (PKU). This book helps children learn about safe and healthy food choices while enjoying creative coloring activities.
About the Authorby Olesia Stadnyk |
Badgerman's PKU Journey |
Details:Deals With PKU Audience: Toddlers, Children Language: English Price: $11.25CAD Amazon Link: |
About the BookBadgerman has a rare condition called PKU. This condition means that Badgerman is a little bit different to everyone else. This doesn't stop him having a great time though and enjoying playing with his friends. About the Authorby Susan Waplington |
Having Hope: Diary Of A Material PKU Pregnancy |
Details:Deals With: PKU Audience: Teens, Adults, Medical Professionals Language: English Price: $23.00 CAD Amazon Link: |
About the BookThe third book in the PKU novel series, written by Carrie, Having Hope is a candid look inside her second pregnancy as she shares her private journal entries with her readers. About the Authorby Amanda Horner |
UCDs
Hear Our Stories: Rares Diseases, Amino Axit (Acid) Metabolism Disorders, Urea Cycle Disorders, Prader Willy, Osteogenesis Imperfects |
Details:Deals With: ALL RARES Audience: Educators, Teens, Adults, Parents Language: English Price: $6.87 CAD Amazon Link: |
About the BookIf you are holding this book in your hands, it means that you are set to enter 22 small stories about 22 patients with rare diseases. A question may pop into your mind: what is a “rare disease”? I will not reveal that now as the door to the answer will be shown gradually through each chapter and each story. However, here I will briefly let you know about why Hear Our Stories is in your hands right now. About the Authorby Tho Trang |
Cookbooks
Recettes Faibles en Protéines |
Details:Deals With: PKU (PCU) Audience: Teens, Adults, Parents, Cooks Language: French Price: $27.49 CAD Amazon Link: |
About the BookVous pensez que les plats faibles en protéines sont fades, sans saveur, difficiles à réaliser, peu variés, et qu'ils ne peuvent pas être servis à tous vos invités parce qu'ils seront déçus? Dans ce livre, Recettes faibles en protéines vous prouve le contraire! Des recettes délicieuses et visuellement attrayantes, dignes de grandes occasions mais conçues pour les repas de tous les jours. Elles plairont assurément à tous! Dans ce livre, les recettes sont regroupées pour certains évènements spéciaux : Noël, Superbowl, souper de filles, cabane à sucre et sauces pour pâtes. Ces recettes prouvent à tous qu'il peut être facile et surtout délicieux de restreindre son apport en protéines.Ces recettes proposent différentes façons d'utiliser plusieurs aliments faibles en protéines trouvés facilement en supermarché, afin de les intégrer plus facilement dans votre quotidien et améliorer la variété de votre alimentation. De plus, la valeur nutritive de chaque recette a été calculée afin de fournir la teneur précise en énergie, protéines, phénylalanine, tyrosine et leucine. About the Authorby Geneviéve Lafrance |
Low Protein Recipes |
Details:Deals With: PKU Audience: Teens, Adults, Parents, Cooks Language: English Price: $26.50 CAD Amazon Link: |
About the BookDo you believe that low protein food is tasteless, hard to cook, repetitive or impossible to serve to all your guests, unless you want to disappoint them? This recipe book will prove you wrong! Delicious and attractive recipes are presented in these pages, for great occasions, but also for daily meals. Plus, those recipes will please everyone around the table! This book regroups recipes into different categories such as: Christmas, the Superbowl, girl's night, sugar shack, and pasta sauces. These recipes are proof that it can be easy and most importantly delicious to restraint your protein intake.These recipes suggest numerous ways to use low protein ingredients that are easily found at the grocery store, and how to integrate them to your routine while diversifying your meals. Furthermore, nutritional values have been calculated in order to give you the precise amount of calories, proteins, phenylalanine, tyrosine, and leucine. This book regroups recipes into different categories such as: Christmas, the Superbowl, girl's night, sugar shack, and pasta sauces. These recipes are proof that it can be easy and most importantly delicious to restraint your protein intake. These recipes suggest numerous ways to use low protein ingredients that are easily found at the grocery store, and how to integrate them to your routine while diversifying your meals. Furthermore, nutritional values have been calculated in order to give you the precise amount of calories, proteins, phenylalanine, tyrosine, and leucine. About the Authorby Geneviéve Lafrance |
Maria's Low Protein Cook Book |
Details:Deals With: PKU Audience: Teens, Adults, Parents, Cooks Language: English Price: $40.04 CAD Amazon Link: |
About the BookThis is a collection of creative low protein recipes with excellent photographs of the dishes for those who must maintain a protein-restricted diet for treatment of PKU or similar inherited diseases of protein metabolism. This book was created by a low protein cooking specialist and a professional home economist with hopes to make reader's lives a bit easier and to share personal culinary experience and expertise. Low protein diets may feel restrictive and full of limitations but with the right ingredients and some basic cooking skills, it is possible to have low protein fine dining at home. Time is valuable so most of the recipes are quick and hassle free. Learning to cook from scratch is the best way to gain full control of the diet and eat healthy and low protein food. About the Authorby Maria Depenweiller |
Natural Alternatives For PKU: Healthy Eating On A Low Protein Diet |
Details:Deals With: PKU Audience: Teens, Adults, Parents, Cooks Language: English Price: $39.25 CAD Amazon Link: |
About the BookWorking With PKU•With a diagnosis of PKU, for a family member and interventions from the metabolic clinic and doctors. •With little consumable PKU foods on the retail market and most of the products are starch, no fiber, junk, manufactured ingredients, carbohydrate loaded and incredibly expensive. •With limited resources and knowledge on improving a PKU diet and making food appealing to the PKU’er. •With frustration and apathy, my mind becoming a total blank on food, phe, levels, and blood tests. About the Authorby Joanna Raddock |
PKU Diet Cook Book For Beginners: A Guide to Thriving With Low-Protein Meals |
Details:Deals With: PKU Audience: Teens, Adults, Parents, Cooks Language: English Price: $21.64 CAD Amazon Link: |
About the Book
This Book Is Your Answer! About the Authorby Dr. Kenneth A. Oliver |
Low Protein Cookery For Phenylketonuria |
Details:Deals With: PKU Audience: Teens, Adults, Parents, Cooks Language: English Price: $41.19 CAD Amazon Link: |
About the BookMuch more than a cookbook, Low Protein Cookery for Phenylketonuria (PKU) is a practical and easy-to-use guide for those who must maintain a protein-restricted diet for treatment of PKU or similar inherited diseases of protein metabolism. It contains hundreds of helpful suggestions for managing the diet. This third edition of Low Protein Cookery for PKU appears exactly twenty years after the original 1977 publication and includes the 450-plus recipes and the hints from the 1988 second edition that have been used and enjoyed by families for nearly a decade. About the Authorby Virginia E. Schuett |
The Complete PKU Cookbook: A Comprehensive Guide For Managing Phenylketonuria With Nutritious Meal Plans and Delectable Low-Protein Recipes |
Details:Deals With: PKU Audience: Teens, Adults, Parents, Cooks Language: English Price: $17.38 CAD Amazon Link: |
About the BookAre you ready to turn your PKU journey into a culinary celebration? About the Authorby Dr. Olivia Adams |
Meal Plans and Delicious Recipes for a Low-Protein |
Details:Deals With: PKU Audience: Teens, Adults, Parents, Cooks Language: English Price: $17.99 CAD Amazon Link: |
About the BookThe PKU Cookbook is a comprehensive guide designed to help individuals with Phenylketonuria (PKU) manage their condition while enjoying a delicious and nutritious low-protein lifestyle. This cookbook provides a wide range of meal plans and mouthwatering recipes specifically tailored to the dietary needs of those with PKU. About the Authorby William A. London |
MSUD CookBook |
Details:Deals With: MSUD Audience: Teens, Adults, Parents, Cooks, Medical Professionals Language: English Price: $ 20.99 Amazon Link: |
About the BookThe MSUD Cookbook provides a comprehensive collection of delicious recipes carefully crafted to assist individuals with Maple Syrup Urine Disease (MSUD) in managing their dietary needs. This cookbook is designed to help MSUD patients incorporate nature's sweetness into every dish they prepare, while ensuring they are adhering to the specific dietary restrictions associated with their condition. With a wide range of mouth-watering recipes, this cookbook offers an enticing and enjoyable way for MSUD patients to savor the flavors of life. About the Authorby William A London |
OTHER (+ All Rares)
Self Reflection Guided Journal |
Details:Deals With:ALL RARES, HCU, MSUD, PKU and UCDs Audience: Teens, Adults, Parents Language: English Price: $ ENTER PRICE HERE CAD Amazon Link: |
About the BookA calming space to return to yourself, this self reflection guided wellness journal offers a gentle weekly rhythm to support reflection, balance, and self-awareness. Inside, you’ll find guided self-reflection pages, a wellness tracker and habit tracker to build mindful routine and improve one step at a time, as well as open space for free journaling. Designed to bring clam and serenity to your daily grind it invites you to move at your own pace and create a ritual that feels nourishing and true. Let it be your companion in cultivating clarity, intention, and inner calm—one week at a time. About the Authorby Maria Depenweiller |
Orphan Drugs: A Global Crusade |
Details:Deals With: ALL RARES Audience: Educators, Teens, Adults, Parents, Medical Professionals Language: English Price: $52.22 CAD Amazon Link: |
About the BookThis book of Ms. Meyers' memoirs is her effort to document the issues that led to enactment of the "Orphan Drug Act of 1983" in the United States. The struggle of patient organizations, medical researchers and the American public stood as a model for the rest of the rare disease world. Eventually many industrialized countries enacted their own orphan drug laws which spurred extraordinary scientific and industrial progress that resulted in new treatments and cures for millions of rare disease patients throughout the world. Ms. Meyers stated that, "One day, I wish everyone dealing with the pain and misery of the 7,000 rare disorders will have access to a treatment that will alleviate their symptoms. The reason I wrote this book was to show that individuals did not have the political power to solve this problem, but working together rare disease patients represent millions of people who can be a formidable political force. And the accomplishments of patient led charities in the USA served as a model for the rest of the industrialized world. Together we became the "Global Crusade" for people with rare disorders." About the Authorby Abbey S. Meyers |
I Am Canada: A Celebration |
Details:Deals With:ALL RARES Audience: Toddlers, Children, Educators Language: English Price: $9.99 CAD Amazon Link: |
About the BookWhat is being a Canadian kid all about? Simple text describes the ample space available to our children in this country, and the freedom they have to grow and dream and share. With artwork from 13 of Canada’s finest illustrators, each page is a celebration and a reminder of the infinite variety of our home and native land. About the Authorby Heather Patterson |
Happy In Our Skin |
Details:Deals With:ALL RARES Audience: Toddlers, Children, Educators Language: English Price: $10.99 CAD Amazon Link: |
About the BookIs there anything more splendid than a baby’s skin? Cocoa-brown, cinnamon, peaches and cream. As children grow, their clever skin does, too, enjoying hugs and tickles, protecting them inside and out, and making them one of a kind. Fran Manushkin’s rollicking text and Lauren Tobia’s delicious illustrations paint a breezy and irresistible picture of the human family — and how wonderful it is to be just who you are. About the Authorby Fran Manushki |
My Life with Diabetes |
Details:Deals With: Diabetes - but inclusion for all rares Audience: Toddlers, Children, Teens, Adults, Parents, Medical Professionals Language: English Price: $16.50 CAD Amazon Link: |
About the BookMeet Tiana! She likes gymnastics, cooking, and drawing. She also has diabetes. Tiana is real and so are her experiences. Learn about her life in this illustrated narrative nonfiction picture book for elementary students. Kids are naturally curious about differences. Tiana sheds light on her life, with the help of experienced children's author Mari Schuh. Tiana is not defined by diabetes, but she does some things differently, like needing to test her blood sugar before meals. Let Tiana tell you a little about her life. Colorful, realistic illustrations and a dyslexic-friendly font promote accessibility. Includes tips for kids about interacting with someone who has diabetes. About the Authorby Mari Schuh |
Have we missed any? Please email us at info@canpku.org to let us know any books that we may have missed!