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The Montreal Children's Hospital

Hyperphenylalaninemia (PKU) Resource Booklet for Families

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Created by Peter M. Nowacki at The Biochemical Genetics Unit; updated by Annie Capua, Margaret Lilly, David Côté, Manyphong Phommarinh and Shannon Ryan

Contents


Why this text exists

This text is written as a source of information and explanation for individuals and families living with phenylketonuria, as well as for students of all kinds seeking information. In most cases PKU and related forms of hyperphenylalaninemia (HPA) are diagnosed following routine newborn screening. New parents are notified of the diagnosis and are given an explanation about the condition and how it is treated. Understandably, many people find it very challenging to retain all of this troubling new information at a first session with a doctor or counsellor. This document has thus been prepared by the staff at the Biochemical Genetics Unit of The Montreal Children's Hospital to expand on this information. If you find that after reading this booklet you still have unanswered questions, please do not hesitate to contact us. It is very important that parents, and other relatives who are involved with the affected child, understand the nature of this condition, as they are effectively the ones who are administering the treatment under the guidance of the doctor and dietitian.

This photo was taken at my wedding a few years ago. I have PKU. I was diagnosed on the 3rd day of my life when treatment with the diet began. I stayed on the diet for 16 years. After I married and when my husband and I decided we would like to have a child, I went back on the diet before conception and I stayed on it throughout the pregnancy. Our daughter Stephanie was born without any evidence of maternal PKU effects. She is now in her second year and passing all her developmental milestones in style. The other woman in the picture is my older sister. She also has PKU but when she was born there was no newborn screening program for PKU. The diagnosis of her disease was made late in her first year of life when she developed convulsions. It was too late for treatment and she has never known the benefits of early diagnosis and treatment as I know them. Our picture is on this web site so that parents of newly-diagnosed infants with PKU will have some evidence of good news. (Irene, May 1998)

Legend:

The girl in this picture is Stephanie, age 2 years, daughter of Irene (the bride in the wedding photo). Irene and her husband planned the pregnancy; dietary control was excellent from conception to delivery. The hazards of maternal hyperphenylalaninemia were avoided. Stephanie has passed all developmental milestones with distinction.


About Us :

Dr. Charles R. Scriver, Former Director, and PAHdb Curator
Manyphong Phommarinh, Programmer and PAHdb Curator
Marie Lefrançois, Dietitian
Shannon Ryan, Technician
Lynne Prevost, Secretary: (514) 412-4417
Fax: (514) 412-4329

How to Contact us :

Biochemical Genetics Unit
Montreal Children's Hospital, Room A-718
2300 Tupper St., Montreal, Quebec, H3H 1P3
Fax: (514) 412-4329
Email: charles.scriver@mcgill.ca

This material was compiled by...

Peter M. Nowacki
Dr. Eileen Treacy
Dr. Charles R. Scriver
Annie Capua
Margaret Lilley
Saeed Teebi
Shannon Ryan
Debby Lambert

Emergency

Should an emergency occur, immediately inform the attending doctor that your child is affected with PKU.

Glossary

This brief list of terms has been included here to assist you in understanding the information contained in this booklet.
Amino Acid
The basic building block of proteins. Phenylalanine is an amino acid.
Carrier
An unaffected person (a heterozygote) who has one abnormal variant phenylalanine hydroxylase (PAH) gene, and one normal PAH gene.
Chromosome(s)
Structures on which genes are found. There are 46 nuclear chromosomes in each cell of the body (23 pairs). One member of each nuclear pair comes from the mother's egg and the other from the father's sperm. The PKU gene is on chromosome 12 (long arm, q; band region 23.2).
Congenital heart disease
A heart malformation that is present at birth.
Enzyme
A substance produced by living cells that promotes chemical change. An enzyme increases the rate at which one metabolite is transformed into another. The Phenylalanine hydroxylase (PAH) protein is an enzyme.
Gene(s)
Units of heredity, or a digital information code embedded in the DNA molecule. Genes are arranged in sequence on structures called chromosomes which are found in the nuclei of our cells. There are approximately 30 000 genes passed on from parent to child. Genes are encoded instructions for the normal development of our bodies and the daily functions of our cells.
Guthrie Test
A blood test that measures the quantity of phenylalanine in the blood. This common test is used for screening newborns for PKU and other forms of hyperphenylalaninemia.
Hyperphenylalaninemia (HPA)
A term which implies higher than normal PHE levels in body fluids. This term encompasses PKU, milder forms of PKU, as well as those forms of HPA caused by the impaired synthesis and recycling of the cofactor (BH4) which enable PAH to convert PHE to TYR.
Inheritance / heredity
The process by which biological traits are passed from parents to their children.
Maternal PKU
A condition in which the developing fetus of a woman who has inherited PKU is subjected to the mother's elevated blood PHE level. Such a level of PHE can harm the fetus even if this fetus has not inherited PKU from his or her parents. Thus, it is essential for expecting mothers who have hyperphenylalaninemia to be on a strictly controlled PHE restricted diet to avoid harming their fetus.
Metabolic Pathway(s)
A term used to describe chemical processes whereby metabolites (proteins, fats and carbohydrates) are converted from one to another.
Metabolism
The sum of all chemical processes that occur in our cells.
Phenylalanine (PHE)
One of the essential amino acids, (i.e. ones that must be provided in the diet, as opposed to non-essential amino acids which can be produced in the body). In most persons the level of PHE in the blood is controlled by converting any excess to tyrosine (TYR), another amino acid. In persons with PKU, PHE accumulates in the blood because their cells are unable to convert PHE to TYR. The chemical substance that converts PHE to TYR is called the phenylalanine hydroxylase enzyme.
Phenylketone
A byproduct of PHE breakdown which is found at high levels in the urine of persons with untreated PKU.
Phenylketonuria (PKU)
A hereditary condition, in which the liver cells cannot convert PHE (phenylalanine) to TYR (tyrosine), recognized by an increased blood phenylalanine level (hyperphenylalaninemia).
Protein
An essential ingredient of all living matter. A chemical compound made of building blocks called amino acids. Proteins have many uses in the body: they are used as building materials, chemical messages, regulators of chemical reactions (enzymes), and so on.
Tyrosine (TYR)
A non-essential amino acid which is made by the conversion of PHE to TYR. It becomes an essential amino acid for the person with PKU, since he or she cannot make their own from PHE.

What is PKU?

Phenylketonuria (PKU), also known as hyperphenylalaninemia, is a genetic condition inherited from both parents, in which the body is unable to use one of the constituents of a normal diet - an amino acid, called phenylalanine (PHE). PHE is found in all protein foods such as meat, eggs, fish, milk and cheese and to a lesser extent in cereals, vegetables and fruits. Proteins are composed of amino acids, and when we ingest proteins we break them down to amino acids which we then use to build the kinds of proteins that we need. Furthermore, our bodies can convert one amino acid to another, thus only some must be ingested, such as PHE, while others (non essential amino acids) can be created by conversion. In PKU, PHE can not be converted to TYR, and so PHE accumulates in the blood, this excess can retard physical and intellectual development. TYR deficiency per se does not occur because the diet provides sufficient TYR.

The Heredity of PKU

As was mentioned above, PKU is a metabolic deficiency (genetic condition) inherited from both parents. But what does that really mean? Genetic conditions are caused by abnormal genes. The mother's egg contains genes on 23 nuclear chromosomes. The father's sperm also contains copies of those genes on his 23 chromosomes. At conception the two sets combine to give us 23 pairs of chromosomes (for a total of 46). It is estimated that each of us 'carries' at least 10 genes which have been seriously altered as a result of mutation. In most people the net result of these alterations is never experienced because we still have that other chromosome with a backup copy of the gene from the other parent. People who receive an altered gene from their parents are called carriers. A female carrier will have some eggs with the defective gene and some with the normal gene. A male carrier will have some sperm with the defective gene and some with the normal gene. If two carriers have a child together and each of them contributes an egg or sperm with a defective gene, that child will have the condition. If the gene that is altered is the gene responsible for the conversion of PHE to TYR, the child is affected with PKU. Every time two carriers conceive a child, the probability that that child will receive the two chromosomes with altered genes is one in four, or 25%. The chance that a child will be an unaffected carrier is two in four, or 50%, and finally the chance that the child will be unaffected and not a carrier is one in four, or 25%. This type of heredity is called Autosomal Recessive Inheritance. Figure 1 is a schematic representation of this type of inheritance, A's represent a functioning gene, whereas a's represent the altered (defective) gene.

NOTE: Despite all our efforts, we could not find if the above picture had or not a copyright. If you happen to know if, in fact, there is, we would appreciate knowing about it, and imediately give the credits to the owners. Thanks.

The Consequences, i.e. PKU

Without prompt treatment the accumulation of PHE in the blood results in progressive brain damage; this is especially so during the early months of life, when there is very rapid brain growth. World wide research has demonstrated that if diagnosis is made and treatment is started in the first few weeks of life, normal brain development is not disturbed. It is essential to point out that good dietary control must be maintained for years, perhaps for life, in order for the positive results to persist. The issue of when to discontinue the PKU diet, is the focus of some controversy. It used to be thought that it could be discontinued in late childhood, after the completion of the rapid brain development. However, research has shown benefits of continuation of this diet well into adulthood, and even indefinitely. Adults with PKU who chose to remain on the diet may benefit from increased ability to concentrate and hence be able to achieve greater goals academically. At the Montreal Children's Hospital, we now recommend that individuals with PKU remain on the diet for life. Individual needs should be discussed with a dietitian in order to determine adaptation of the diet in adulthood. The following passage illustrates early treated PKU.

(Source: Harvey L. Levy, MD, FAAP, Phenylketonuria-1986, Pediatrics in review, vol.7, no.9, March, 1986)

Early-Treated PKU

Source: Harvey L. Levy, MD, FAAP, Phenylketonuria-1986, Pediatrics in review, vol.7, no.9, March, 1986 .
  • This girl came to attention when her newborn screening blood specimen collected at four days of age indicated a phenylalanine concentration of 20 mg/dL (equivalent to 1200 µmol/L). She was referred to a metabolic center for evaluation. There, PKU was confirmed on the basis of a plasma phenylalanine level of 41 mg/dL (2460 µmol/L)and normal concentrations of other amino acids. At eight days of age, she began a phenylalanine-restricted diet. This resulted in excellent metabolic control of blood phenylalanine levels (2 to 10 mg/dL or 121 to 600 µmol/L) and normal growth and development. When she was 5 years old, the diet was discontinued, in accordance with the clinic's policy at that time. Her intelligence has remained within normal range and she has completed high school with a 'C' average. However, her measured IQ has decreased from 132 at 5 years of age to 85 at 16 years of age, and her psychology assessments have disclosed deficits in visuomotor and fine motor performance. She recently became engaged and she and her fiancee have participated in discussions about maternal PKU. Emphasis has been given to the need for careful pregnancy planning so that the fetus can be protected by initiation of the phenylalanine-restricted diet prior to conception and its continuation throughout pregnancy.
This case illustrates the prevention of mental retardation in PKU by identification shortly after birth and early dietary treatment, the reduction in IQ and other deficits that are often seen when the diet is discontinued during childhood, and the emergence of maternal PKU as an issue for adolescent girls.

Maternal PKU

Maternal PKU
Women with PKU who have been properly treated throughout childhood and adolescence can develop normally, lead normal lives, and have normal IQs. However, if they are no longer following a strict low PHE diet their blood will contain high levels of PHE, which is very dangerous for a developing baby. We strongly recommend that women with PKU use reliable methods of contraception to prevent unplanned pregnancies. When they are ready to have a child, they should speak to a metabolic team at least six months before trying to become pregnant, to discuss treatment and follow-up.
It is possible for women with PKU to have normal children. They must be able to strictly follow their low PHE diet from before the time they get pregnant, throughout pregnancy until their baby is born. Their blood PHE levels should be monitored weekly to ensure they remain within a healthy range for their baby.
Even when proper PHE levels are maintained PKU women still have a higher risk of giving birth to children with smaller than average head size and who don't grow as quickly as other children. If they are unable to maintain control of their PHE levels and they allow these levels to rise the risks of having a baby with congenital heart disease, small head size, mental retardation, and slower than average growth before and after birth also rise.
Should a PKU woman begin an unplanned pregnancy she should immediately seek medical advice from health care workers familiar with PKU. If she is able to bring her blood PHE levels down to a safe range within the first eight weeks of pregnancy her chances of having a healthy baby are still quite good.

The Treatment

In populations of European descent, and other places where the people are of "European" descent, about 1 infant in 10,000 is born with Classical PKU. Classical PKU, if not treated in the first few weeks of life, usually causes profound and irreversible brain damage. Children affected with PKU are usually diagnosed shortly after birth when a couple of drops of blood drawn from a heel prick reveal a high level of phenylalanine in the blood. This is called a positive screening test. An initial positive test does not necessarily mean that the child will have PKU. A second test must be conducted to confirm the result of the first. After diagnosis, the infant is treated without delay. The treatment for PKU is a special diet which is selectively low in PHE, but contains adequate amounts of other nutrients. Adherence to the diet is crucial in infancy and childhood, and we now have reason to believe that it would be beneficial to remain on it through life. The diet is supplemented with a special formula contains very litlle phenylalanine but which contains all other essential amino acids as well as vitamins and minerals required for the child's normal development. A PKU diet is prescribed by a physician, designed by a dietician, administered by the parents, and monitored and revised over time as the child's nutritional needs change, due to growth, illness, puberty, changing tastes and eating habits. Some foods included in the PKU diet are not normally available at regular grocery stores and so a special food distribution center has been set up.
(See National Food Distribution Center.)

The National Food Distribution Center (NFDC)

What is the National Food Distribution Center (NFDC)?
NFDC is a non-profit food bank which was set-up in 1974 by the MCH Biochemical Genetics Unit and a Canadian team of doctors and counsellors in the field of biochemical genetics. The Center imports a variety of special foods useful for the treatment of certain metabolic diseases. These products come from all over the world and are distributed by NFDC to hospitals and clinics across Canada.
This service is provided to all canadians with metabolic conditions. In Quebec, products are provided free of charge to elligible families, while some canadian provinces charge a nominal fee for certain products. Non-canadians with metabolic conditions who need low protein foods can contact the International Foodbank. A letter from a doctor must be provided for orders to be approved. International Foodbank's website provides a list of available foods and a price list in US dollars for international orders.

Who needs these foods?
There are over 1000 children in Canada alone who suffer from hereditary metabolic diseases such as Phenylketonuria (PKU), Maple Syrup Urine Disease (MSUD) and Galactosemia (GALT). Many of these children are on severely restricted diets; they depend on the specialty foods that are only available at the Center. Getting the right food, on time, is therefore not a convenience but a medical necessity.
Different provinces have different methods of making NFDC products available. In Quebec, once a child is diagnosed with a genetic disorder which requires a special diet, the family is referred to the closest clinic. This clinic will serve as an agent between the family and the National Food Distribution Centre. It is important for representatives to understand that these food orders are crucial for those who suffer from genetic disorders. It is equally important for parents to understand that these products are highly specialized and not always in stock due to unpredictable production and availability fluctuations.

When should orders be placed?
The demand for the products distributed by the National Food Distribution Center is difficult to forecast. The Center places regular orders with suppliers overseas and in the United States, but it is not unusual for some shipments to be delayed. Families and representatives of hospitals and clinics should try to anticipate what foods they need and, whenever possible, allow at least 3 weeks for delivery of these highly specialized products. In this way, NFDC staff can better meet the needs of patients across Canada. Of course, not all orders take this long, but a little leeway makes the process easier for everyone involved and helps minimize last-minute emergencies.

How are orders placed?
To order products, representatives from hospitals and medical clinics can fax or mail their food orders to the following address:

Biochemical Genetics Unit
Montreal Children's Hospital,
2300 Tupper, Room A-718
Montreal, Quebec, H3H 1P3
fax: (514) 412-4329
Once the order is registered at the Montreal Children's Hospital, it is faxed to the FDC for completion. There is a particular form to fill out when writing an order and you must ensure that the name and diagnosis of the patient is clearly inscribed, as well as the product name or code number and the quantity required. The address where the food is to be delivered should always be specified, along with the name of the representative who placed the order. Other provinces have different methods of specialty products distribution : ask your metabolic specialist for details.

NOTE: If your country or region does not have such a resource, perhaps it could be established. The interest of parents was an important stimulus for the Canadian initiative.

Diet

Individuals with PKU receive a diet containing limited phenylalanine. Foods such as meat, fish, eggs, cheese, milk products, legumes, and bread, which are high in PHE are eliminated or greatly reduced. Artificial protein substitutes are given which contain amino acids without phenylalanine. These formulas, such as Phenex-1 and Phenylfree, are designed to meet the specific needs of children with PKU. The dietician will calculate the exact amount of formula required for your child. It is essential that this is taken daily, preferably 2 to 3 times a day in order to insure proper growth and nutritional balance. Accurate measurement and careful mixing of this formula is necessary. For infants up to 4 months of age, use freshly boiled water (cooled) and sterilize bottles and equipment. For older children, the formula is mixed with water. If your child prefers, this may be flavored with additives such as vanilla, sugar, or flavor extracts.
Your child cannot survive on formula alone. Some phenylalanine is necessary in his or her diet. This is essential for growth and is taken as a specific amount of breast milk or regular infant formula for babies, or food exchanges in older children. Your child will be instructed as to the precise intake of phenylalanine required, which will vary with each individual. The requirement depends on which type of PKU your child has (e.g. severe vs. mild) and the period of growth they are in. We use the methods of exchanges, or choices, where one exchange is equal to 15 mg of phenylalanine; for example ¼ cup of fresh or cooked carrots is equivalent to one exchange. A list of food exchanges can be obtained from your dietician. A new-born baby with classic PKU may require 20 exchanges a day, a five year old requires between 14 and 30 exchanges, and an adult woman requires between 15 and 50 exchanges a day. We encourage our families to become familiar with the methods of calculating these exchanges. Free foods, those without phenylalanine, such as tapioca pudding may be given as desired.
Your child may experience eating problems that are common and can be managed with patience and determination. As your child gets older, he or she will understand that maintaining good dietetic control is to his or her advantage. We recommend that the exchanges (allowed phenylalanine) be distributed evenly throughout the day in order to keep the diet as normal and balanced as possible. Your dietitian will carefully balance the calories, protein, carbohydrates, and fats required by your child so that the diet is optimal for proper growth and development.

  • Diet sweeteners such as Nutrasweet®, Sweetmate®, Canderal®, or aspartame® are made from phenylalanine and aspartic acid. Thus, patients with PKU should avoid diet food and drinks containing high PHE sweeteners.

  • Social eating: Occasionally your child may be invited to a social gathering when the diet is cumbersome. We want your child to go! We strongly encourage you NOT to let the diet interfere with social activities, even the ones involving food. Your dietitian may advise you as to how the diet can be adjusted before such events which will allow some liberalisation of the diet on those specific days.

Problems Which May Occur & How We Can Help

  • Skin rashes and diarrhea:
    If your child develops a skin rash and/or diarrhea, the phenylalanine ingested may be too low and may need readjustment. Phone your metabolic center to discuss this.
  • Immunisations:
    Routine immunisations are most commonly given at the usual times. Discuss this with your child's pediatrician.
  • Illness:
    When your child develops a cold or infection, during these times their blood phenylalanine may rise temporarily. Please encourage adequate calories by supplementing the diet with items such as "free foods" : sugary drinks, vegetables, and so on. In a day or two, the level usually reverts to normal. If the infection persists or if there is persistent vomiting or continued poor appetite, please contact your metabolic center.

Research in progress

Apart from providing a clinical service, our centre is actively involved in PKU research. This research / clinical interphase helps us and also you, the families, in understanding the biochemical basis of the particular type of PKU in your family and facilitates its management. Since the gene causing PKU was identified by Savio Woo and colleagues in the mid 80's, more than 350 disease-causing mutations (or changes in the gene) have been identified. Some of these mutations appear to originate in specific European populations and may give us information about your family history. Knowing the mutation may also help predict the enzyme activity and the type of PKU your child has, and may be used as an initial guide to his/her particular phenylalanine requirements. In our laboratory, we have established an efficient method to scan for these mutations.
We are also involved in research for the development of a different type of treatment that puts less of a burden on the patient and their family than does the traditional dietary therapy. The aim of this research is to make an enzyme which, taken orally, can degrade phenylalanine in the digestive tract before it is absorbed into the body. With this treatment we hope that patients would be able to at least relax their diet if not eliminate it entirely.
Our Division maintains a database for information regarding the many types of PKU mutations. This database is maintained by Manyphong Phommarinh, Mélanie Hurtubise, Lynne Prevost and Charles R. Scriver. It is now on the Internet (via the World Wide Web), as you already know if that is where you obtained this booklet, if not you may try the following address: http://www.pahdb.mcgill.ca .

Available Foods

If you reside in Quebec, please contact us for a list of available foods, and the order form. Otherwise, please contact your local metabolic diseases center.

Monitoring

The key to successful management of PKU is careful monitoring of blood PHE levels. This is done by regular blood testing either by drawing blood at the hospital, or by pricking a finger or heel with a special sterile lancet, and dripping some drops of blood onto a special paper, called a Guthrie Card, which is then sent for analysis to the provincial center. Figure 2 is an example of the well controlled blood phenylalanine level of one of our patients. For directions on how to perform the blood tests at home please see Home Blood Testing below.

Fig.2. Successful Monitoring and control.



NOTE: Some values are omitted here for the purpose of clarity.

This graph represents the average monthly PHE levels monitored monthly after birth in January, and over 2 weeks after 6 months of age. The baby was born with an extremely high level of PHE, which was controlled by diet. It can be seen that after June, the PHE levels remain, more or less, within the upper and lower limits. With this type of continual control, the parents and child can most likely expect normal physical and mental development.


Home Blood Testing

The blood test procedure outlined below is generally carried out:

    Children aged:

  • Birth to 3 years old tested weekly or every two weeks,
  • 3 to 7 years old tested every two weeks,
  • 7 years and older tested monthly.

NOTE: It is the parents' responsibility to arrange blood tests at the hospital. We do however encourage that parents learn to perform the blood test procedure outlined below and mail the test paper into the test center when PHE values are under good control. In addition, our dietitian will carefully monitor your child's weight gain and growth throughout their development, so that we can know what adjustments to make in the diet, the frequency and procedure for blood tests, as well as frequency of medical check-ups.


Instructions for home Guthrie Blood test procedure

Source: Réseau de Médecine Génétique du Québec, Instructions pour un prélèvement de sang adéquât sur papier filtré, 11/95.
  1. Warm the heel or finger to be pricked.
  2. You may hold the heel or finger lower than chest level, and / or gently squeeze the area.
  3. Sterilise the skin with alcohol and sterile gauze.
  4. Prick with sterile lancet.
  5. Allow a large drop to form on the skin surface.
  6. Allow drop to drip onto the centre of circle.
  7. Drip consecutive drops also in the centre so that it stays moist and the blood spreads (soaks) out from the centre to the edges of the circle. DO NOT allow the blood to dry before applying the next drop.
  8. Fill 3 out of the five circles.
  9. Make sure that the circles are completely filled and not overfilled.
  10. Allow the Guthrie strip to air dry.
  • IMPORTANT: Fill out both the cover sheet, and the blood test strip with :

    Patient's name,
    Date of Birth,
    Blood test date,
    Name of your PKU doctor.


A Sense of Optimism

Because of the fact that effective treatment is readily available some people regard PKU as a disease of the past. You are however already aware that living with a loved one with PKU is far from trivial. Metabolic Units are designed to treat PKU and other metabolic diseases seriously and help patients and their families cope with these diseases at different levels. The metabolic team will help you medically, for example, when your child is ill, they should be notified in case their advice or intervention becomes necessary. They will help with the low protein diet and diet-related problems. Dietitians are there to give advice as your child grows, copes with minor illnesses, develops different tastes, and so on. Genetic counsellors are also available to answer your questions. When you need information about PKU, they can provide it. When your child reaches the age of making reproductive decisions, they are there to speak with him or her, to make sure that as an adult, he or she understands the condition and its hereditary aspects. Finally, many metabolic teams are active in PKU research. Research may in the future lead to even better management of PHE levels, and even better treatment strategies.

Contacts and Links

Canadian Resources
  • The Canadian Society For Metabolic Disease
    Sharon Jamieson, Treasurer/InfoCo-ordinator
    3134 Plimsoll
    Coquitlam, British Columbia, Canada V3C 3X6
    Phone: (604) 464-1017
  • National Food Distribution Center
    Roman Bhattacharya, Manager
    1030 Rue St. Alexandre, Suite 300
    Montreal, Quebec, Canada H2Z 1P3
    Email: national@microtec.net
    URL: http://www.international-foodbank.org
  • PKU Canada Inc. Family Association
    Hospital for Sick Children
    555 University Avenue
    Toronto, Ontario, Canada M5G 1X8
    Phone: (416) 813-6356
    Fax: (416) 813-5745
American Resources

British Resources

  • National Society for PKU (NSPKU)
    7 Lingey Lane
    Wardley, Gateshead, Tyne & Wear NE10 8BR
    Phone: 0845-603-9136
    Email: nspku@ukonline.co.uk
    URL: http://nspku.org/
  • Research Trust for Metabolic Diseases in Children (RTMDC)
    Golden Gates Lodge
    Weston Road
    Crewe, Cheshire, UK CW1 1XN
    Phone: 01270 250221
    Fax: 01270 250244

Copyright © 2003 DeBelle Laboratory - Created [2002.10.17.208076] - Updated [2009.08.31]