Support Groups and Programs to Assist Families

The incomplete list here is the beginning of a more extensive list we would like to create. We would like to expand this list to include all groups and programs that support families with PKU in the US, Canada and abroad. If you are involved in a support group and can provide information about it, we would be very pleased to add your group to our list. We are interested also in regularly published newsletters, summer camps and other special programs that support families or persons with PKU. Please include a brief description of the group or program, to whom it is open, and contact information including name, address, telephone, fax and e-mail address when available.

Please send information on support groups and programs to:

National PKU News
6869 Woodlawn Ave NE #116
Seattle, WA 98115
E-mail: schuett@pkunews.org

Index of Groups and Programs

United States National Groups:

Regional Groups:

Outside the United States

Arizona Network for PKU and Allied Disorders (ANPAD)

ANPAD's mission is to help individuals with PKU and Allied Disorders adhere to their treatment, inform families of the latest research and treatment advances, raise public awareness of PKU and Allied Disorders and create a support network. This is accomplished through camps, cooking workshops, educational seminars, online and print publications and newsletters, and recreational activities which bring families together to learn, share ideas, and encoruage one another.

For more information, contact:

Arizona Network for PKU and Allied Disorders (ANPAD)
7427 E. Juarez St.
Tucson, AZ 85710
Tel: (520) 419-6868
E-mail: anpad2011@yahoo.com
Website: www.arizonapku.com

California Coalition for PKU and Allied Disorders

We are a 501(3)c charitable organization. We are a volunteer group of individuals committed to provide support, information, education and advocacy to individuals with PKU and other inborn errors of metabolism. Established in 1981, we were known as PKU Parents of California. In 2005, we changed the name to the California Coalition for PKU and Allied Disorders in order to provide support to individuals with genetic IEM’s.

For more information contact:

CCPKUAD
5942 Edinger Ave.
PMB 191, Suite 113
Huntington Beach, CA 92649
Tel: (714) 642-8790
Email: pkucoalition@gmail.com
Website: www.ccpkuad.org

Children’s PKU Network

Established in 1991, Children’s PKU Network (CPN) is a national non-profit organization dedicated to providing support and services to those involved in the treatment of PKU. CPN has been recognized twice by the State of California, commending the organization for its outstanding contributions and for the support it has given to PKU persons and their families. CPN maintains several programs designed to assist PKU patients and their families, including:
  • Crisis Intervention. The diet supplement (medical food) needed to treat PKU can cost up to $10,000 annually and is not covered by many insurance companies. CPN donates the formula, specially formulated low protein foods, scales and bread bakers to families who are faced with financial crisis situations such as loss of employment, environmental disasters, insurance denial, relocation, etc.
  • Newborn Express. Upon notification of a newly diagnosed baby, CPN sends the parents "A Message to PKU Parents," a short video and a "Newborn Express" welcome package, including a welcome letter, valuable information and order forms for the products that will be essential to PKU treatment, along with a list of resource materials. All PKU parents are then added to our database to receive future mailings.
  • Clearinghouse. CPN currently has over 100 articles, research studies and videos on file pertinent to PKU and other metabolic disorders. All initial requests are provided free of charge, with additional requests costing $2.00 each.
  • Scale Distribution. CPN has an agreement with one of the manufacturer’s of the precise digital scales required to measure foods and formula for PKU treatment to provide them at a reduced cost to families.
  • Regional Coordinators Council. CPN has established a council with volunteer representatives to act as national liaisons between clinics, families, health professionals and the CPN national office. This council enables CPN to develop and maintain closer ties with the PKU population and PKU health care providers.
  • Scholarships. In 1995, CPN instituted a scholarship program that awards two $1250 scholarships to qualified young adults with PKU.
  • Newsletter. CPN publishes the UPDATE, a semi-annual newsletter with a circulation of 3,000.
For more information, contact:
CPN
3790 Via de la Valle, Suite 116E
Del Mar, CA 92014
Tel: (858) 509-0767
Fax: (858) 509-0768
E-mail: PKUnetwork@aol.com

 

PKU Organization of Illinois

We are a non-profit organization, started many years ago. We provide the following services to Illinois families:

  • Newsletter. Our newsletter is the PKU Press (available by calling our voice mail number).

  • Annual Events:
    • New parents' coffee
    • Snack exchange
    • Summer picnics
    • 2-day PKU camp in September
    • Annual meeting in November
    • Cookie exchange at Christmas

For more information, contact:

PKU Organization of Illinois
PO Box 102
Palatine, IL 60078-0102
Tel: 708-415-2219
Fax: 312-652-6151
E-mail:
info@pkuil.org
Web site: www.pkuil.org

 

Indiana PKU and Allied Disorders Association

We are a 501(c)(3) nonprofit organization, organized in 1999. We provide the following services to Indiana families:

For more information, contact:

Indiana PKU & Allied Disorders Association, Inc.
P.O. Box 28
Carmel, IN 46082-0028
Website: www.indianapku.org
E-mail: president@indianapku.org

 

Iowa PKU Foundation

The mission of the Iowa PKU Foundation is to help Iowan PKU families to secure adequate nutritional, educational, and emotional support to enhance their lives. In addition to a newborn packet, a yearly newsletter, and a yearly fundraising event, the Iowa PKU Foundation also offers a college scholarship to individuals with PKU.

For more information, please contact Blythe Stanfel
bstanfel@gmail.com or write to the following address:

Iowa PKU Foundation
P.O. Box 220
Des Moines, IA 50301-0220

 

PKU CORPS

The Community Outreach Program is based in Children’s Hospital, Boston, MA. An outgrowth of research and community support programs, the PKU CORPS provides support in the following areas. The PKU CORPS also serves as a general resource for families and persons with PKU.

  • Maternal PKU-Oriented Programs
  • Resource Mothers’ Program. Home visits to pregnant women with PKU by trained Resource Mothers, who are mothers of a child with PKU themselves, give support and build skills necessary to comply with medical and nutritional recommendations.
  • Family Weekend. A weekend for women with PKU and their spouse or significant other to provide education and support on topics related to pregnancy and diet. This pilot program seeks to involve prospective fathers in supporting their wives to follow the PKU diet.
  • Newsletter. A periodic newsletter is published.
  • YMCA camping for children.

For more information, contact:

Ildiko Szabo
PKU CORPS Program Coordinator
Children’s Hospital
300 Longwood Ave
Boston, MA 02115
Tel: 617-355-7346
Fax: 617-730-0461
E-mail:
baileyi@A1.tch.harvard.edu

 

New England Connection for PKU and Allied Disorders

We were established as a non-profit organization in 1995. The New England Connection is set up for PKU families residing in the New England states and nationally for allied disorders (including homocystinuria, tyrosinemia, maple syrup urine disease, organic acidemias, urea cycle disorders and galactosemia). Our Board of Directors consists of both parents and professionals in the New England area. We have no intentions of interfering with the activities of existing groups, but would like to work closely with these groups in order to help families in the most efficient way.

We are currently establishing a database for each disorder listed above and ask your assistance in spreading the word to families who may not know of our organization. There are many programs we wish to implement, including:

  • Welcome packages for new families and follow-up home visits by volunteer parents or adults with the disorder in question.
  • Annual conferences.
  • Crisis intervention, providing families with low protein foods and formulas on a limited basis during emergencies.
  • Support meetings, cook-ins, picnics, family weekends, etc.
  • Educational programs for children, teens and adults.
  • Research funds and scholarship programs.
  • Establishing a group home for those needing assistance with diet and maternal care.

Already, the New England Connection sells a variety of items to make diet management easier at a reduced cost, including bread machines, donut makers, ice cream makers and digital scales.

We need volunteers, fund raising volunteers and contributions! If you are able to volunteer, either short term or long term, if you can help with fund raising events or by writing to your employer or sending a donation, please let us know. We will greatly appreciate all help.

For more information, contact:
John Sullivan
5 Jones Lane
E. Sandwich, MA 02537
Tel: (508) 888-2295 (for orders only)
Fax: (617) 821-2545
E-mail: pkuconnect@aol.com
Website: www.necpad.org

 

South Dakota Support Group

A support group to benefit state PKU families.

  • Annual "Family Days" held in Sioux Falls, SD
  • Currently working on starting a PKU summer camp.

For more information, contact:

Gaye Marie Heidinger
PO Box 295
Mitchell, SD 57301
Tel: 605-996-4000

 

Tennessee PKU Foundation

We were established and incorporated as a nonprofit organization in the state of Tennessee in February of 2007. Although our name hasn't changed, we recently enhanced our mission to include the allied disorders and further our outreach to all those affected by a protein restricted diet. Our first newsletter will be available mid-summer 2007. To join our mailing list, contact kellye@tennesseepku.org

Our Activities:

  • New Family Support Package, providing gram scales, Food List for PKU, and educational materials.
  • Walk for PKU, raising community awareness and funds for PKU research.
  • Annual Meeting planned for the first Saturday in November.
  • IEM Family Day, assisting area dieticians with the Inborn Errors of Metabolism conference held each year.
  • Family Support Meetings, picnics, recipe exchanges, etc.


  • Coming Soon:
  • PKU Putt Golf Tournament, raising money to support our outreach programs and research fund.
  • Crisis Intervention, temporary dietary assistance in crisis situations (loss of insurance, job loss, etc.)
  • Mentorship Program, connecting families and providing return to diet support.

  • If you would like to volunteer or be a part of our organization, we would appreciate your involvement. Visit our website to learn more about us www.tennesseepku.org

    For more information, contact:
    Kellye McDowell
    7549 Aubrey Ridge Drive
    Fairview, TN 37062
    Tel: (615) 799-6202
    E-mail: kellye@tennesseepku.org
    Website: www.tennesseepku.org

     

    Intermountain PKU and Allied Disorders Association

    We are based in Salt Lake City, Utah and cover the states of Utah, Nevada and Idaho.
    IPAD was started in 2008 and is a 501(c)(3) non-profit organization. Our activities and services include support events, educational programs, a newsletter, recipe and food exchanges, and a welcome kit for new families.

    For more information, contact:
    Amy Oliver, President, IPAD
    P.O. Box 9762
    Salt Lake City, UT 84109
    E-mail:
    ipad@go-ipad.org
    Website: www.go-ipad.org

     

    Argentina: Grupo de Padres PKU (PKU Parents’ Group)

    Grupo de Padres PKU was started by 3 mothers of children with PKU in 1992 to provide support to other parents. At that time, there was no information in Spanish in our country, so we started to translate many articles on PKU into Spanish. Then we made a mailing list of all PKU children and parents in Argentina and contacted each one. We have organized some meetings alone, and some with the help of doctors. We bought low protein foods (there is none here) and distributed it to families. We contact many countries to get information and to learn about other doctors and other support groups. We wrote and published a cookbook in Spanish, "Cocinemos con Pocas Proteinas." We used to have a newsletter that helped many families.

    For more information and to purchase the cookbook, contact:

    Grupo de Padres PKU
    Echeverria 2210 5º B
    (1428) Buenos Aires
    Argentina
    Tel/Fax: 00 54 11 4784-8446
    E-mail:
    pku@netizen.com.ar

     

    Australia: The New South Wales PKU Association

    The New South Wales PKU Association promotes awareness of PKU by:

    • Providing information to individuals, care takers and support to families affected by PKU
    • Actively re-establishing contact with adults who have PKU and do not attend The Adult Metabolic Clinic or who may be off diet
    • Lobbying Government bodies where appropriate

    The Committee is as follows:

  • Website: www.pkunsw.org.au
  •  

    Austria: OEGAST (Osterreichische Gesellschaft fur angeborence Stoffwechselstorungen / Austrian Society for Inborn Metabolic Disorders)

    This non-profit organization was established in 1985 for and by parents who have one of the inherited disorders of amino acid metabolism and for adolescent and adult patients. By now we have about 150 members. The annual membership fee is $40.

    Our main objectives are the following:

    • Parent/patient support. To provide information and support for parents and patients with PKU and galactosemia (and a few others).
    • Improve Cooperation. To improve the cooperation with the medical community and also within the medical community for understanding of inherited diseases of inborn metabolic disorders.
    • Education. To educate parents and juveniles (10-15 years of age) about the basic principles of diet. To distribute information on PKU and allied disorders to parents, patients, interested people and many organizations and institutions in the medical, dietetic and social fields.
    • Support pregnant women with PKU. To support women with PKU and their partners on topics related to pregnancy and diet during pregnancy.

    The main activities of OEGAST are:

    • Annual meetings in spring with lectures held by specialists on various topics. Exhibitions of low protein products.
    • Working groups and cooking courses in different parts of the country twice a year.
    • Regional meetings on an informal basis—summer picnic, cookie exchange around Christmas.
    • Newsletter which is sent to all members twice a year.
    • Dietetic holidays for children from 10-16 for two weeks with lots of sports and entertainment to improve or learn self-management of the PKU or galactosemia diet.

    We also provide a food composition table, regular low protein recipes and with the help of DIG PKU (the German sister organization) interesting and informative scientific brochures and leaflets on various aspects of PKU.

    For more information, contact:
    OEGAST
    Juchgasse 34/18
    A-1030 Vienna
    Austria
    E-mail:
    oegast@magnet.at
    Web site: www.oegast.at

     

    Canada: The Canadian Society for Metabolic Disease

    The Canadian Society for Metabolic Disease is a non-profit organization that provides information and support for parents with children suffering from a metabolic disease. Our objectives are the following:

    • Parent support. To provide a forum where parents and professionals can share knowledge and experience.
    • Medical community support. To foster in the Canadian medical community a greater awareness and understanding of the detection, treatment and control of metabolic diseases.
    • Research. To promote research into improving early diagnosis, discovering new and more effective treatments and finding a cure.
    • Public education. To educate the public about metabolic diseases.
    • Centralization of information. To create a central pool of information for each metabolic disease of interest to our members.
    • Improved services. To work with government to improve services to families of children with special needs.

    Our organization supports such metabolic disorders as PKU, galactosemia, glycogen storage disorders, cystinosis, urea cycle disorders, Leigh’s disease, hereditary tyrosinemia, and organic acidemias. Annual membership is $20.00 Canadian. This includes all membership privileges and a newsletter subscription.

    For more information, contact:

    The Canadian Society for Metabolic Disease
    5301 Ranger Ave
    North Vancouver, BC
    Canada V7R 3M7

     

    Europe: ESPKU (European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria)

    This is a non-profit organization with 20 member countries in Europe and Turkey. It was established in 1986 as an umbrella organization for all national societies, registered under Belgian Law and recognized as a "non-governmental organization" by the European Union. It is supported by a scientific committee composed of professionals in the field.

    The main objectives of the group are:

    • To exchange scientific results and clinical experiences on detection, treatment and control of PKU and allied disorders within the European countries.

    • To improve cooperation with the medical community for greater awareness and understanding of phenylketonuria and allied disorders.

    • To promote research in early diagnosis and effective treatment of inherited disorders of amino acid metabolism.

    • To cooperate with governments and relevant institutions for better services to families with affected children.

    • To provide formulas and low protein food under the same conditions and concurring regulations in all European countries.

    Our main activities are:

    • Annual meetings with lectures given by specialists, working groups on various topics, cookery demonstrations and exhibitions of formulas and low protein foods.

    • A newsletter is published twice each year.

    • Other information is provided to members.

    For more information, contact:

    Mr. Jean-Marie Criem
    ESPKU President
    Woestijne, 16
    B-9880 Aalter
    Belgium
    Tel: +32-53601212
    E-mail:
    webmaster@espku.org
    Web site: http://www.espku.org/

     

    Germany: DIG PKU e.V. (Deutsche Interssengemeinschaft Phenylketonurie und verwandte angeborene Stoffwechselstorungen-—German Society for Phenylketonuria and Allied Inherited Disorders)

    This non-profit organization was established in 1975 for parents of children who have one of the inherited disorders of amino acid metabolism and for adolescent and adult patients. Currently we have about 1200 members. Annual membership fee is DM 36. (Includes all membership privileges.)

    The main objectives of the group are:

    • To provide information and support for parents and patients with phenylketonuria and allied disorders of amino acid metabolism.

    • To improve the cooperation within the medical community for awareness and understanding of inherited diseases of amino acid metabolism.
    • To educate parents about the basic principles of diet (mainly the PKU diet).
    • To support women with PKU and their spouse on topics related to pregnancy and diet during pregnancy.
    • To distribute information on PKU and allied disorders to parents, patients and numerous institutions in the medical, dietetic and social fields.

    Our main activities are the following:

    • Annual meetings with lectures given by specialists, working groups on various topics, cookery demonstrations and exhibitions of formulas and low protein products.
    • Meetings of regional groups (picnics, family weekends) with lectures given by specialists, discussions, baking and cooking courses and food/formula exhibitions.
    • A newsletter is sent out to all members twice a year.
    • Scientific brochures and leaflets on various aspects of PKU and allied disorders, food composition tables and low protein recipes are available through the organization.

    For more information, contact:

    DIG PKU e.V.
    Adlerstrasse 6
    D-91077 Kleinsendelbach
    Tel: +49-9126-44
    Fax: +49-9126-3 09 46
    E-mail:
    dig-pku@usa.net
    Web site: www.pku.de

     

    Israel: ETAN (Israeli Association of Rare Disorders)

    We are currently creating this association, to assist families and related professionals with accurate information and mutual support groups. In order to provide quality services we are contacting similar organizations in other countries. Our intention is to gather appropriate information and to collaborate in areas of mutual concern.

    For more information, contact:

    Ms. Gilat Blecher
    General Manager
    PO Box 4666
    Tel Aviv
    61046 ISRAEL
    Tel: 973-3-5252516
    Fax: 972-3-5259941

     

    Sweden: Swedish PKU Society

    Our society started 10 years ago. About 150 families from all over the country participate.

    Our main goals & activities are:

    • To support parents with PKU children in their contacts with clinics and to help them understand what it means to have PKU.
    • To keep updated on PKU research.
    • Newsletter which comes out four times a year.
    • Family weekend. We organize this each year. We have fun, exchange experiences, etc.
    • We have plans for a weekend for teenagers with PKU.

    For more information, contact:

    Kajsa Aspelin
    Solhemsgatan 12A
    692 33 Kumla
    Sweden

     

    Switzerland: CHIP (the Swiss Interest Group for Phenylketonuria)

    Founded in 1988, our group has approximately 130 members (including people with PKU, parents and supporters). As of 1965, all newborns in Switzerland are being screened for PKU. Since then, about 102 children have been diagnosed with PKU (about four babies each year).

    Our main goals and activities:

    • Represent PKU whenever necessary in the public (government, etc.)
    • Support for purchasing special dietary food (import from other countries, etc.)
    • Yearly newsletter
    • Contacts to the food industry to make them aware of PKU (target: indicate amount of phe on package label)
    • Support for the PKU teenager
    • Organization of cooking courses
    • Inform members about PKU events in other countries
    • Help Desk for questions regarding insurance
    • Negotiations with insurance companies and health departments
    • Organization of summer and winter camps for kids
    • Hotline regarding questions (cooking, illness, etc.)

    Yearly subscriber fee per family: Fr. 70 (US $50)

    For more information, contact:

    Erika Frei
    Director CHIP
    Feldstrasse 25
    8902 Urdorf
    Switzerland
    Tel: +41 734 33 81
    Web site:
    www.onet.ch/PKU/

     


    Last update: June 2012
    National PKU News: www.pkunews.org
    E-mail: schuett@pkunews.org