Phenylketonuria Support

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Organizations: Are there good support groups for ...

    https://www.thinkgenetic.com/diseases/phenylketonuria/organizations/17662
    There are several support groups for people with phenylketonuria. The National PKU Alliance works to improve the lives of families and individuals associated with PKU through research, support, education and advocacy, while ultimately seeking a cure. The Children's PKU Network was founded in 1991 to address the special needs and concerns of individuals and families with PKU.https://www.thinkgenetic.com/diseases/phenylketonuria/organizations/17662

Phenylketonuria (PKU) Support Groups Online DailyStrength

    https://www.dailystrength.org/group/phenylketonuria-pku
    Phenylketonuria (PKU) Support Group. Phenylketonuria [PKU] is a human genetic disorder, in which the body lacks phenylalanine hydroxylase, the enzyme necessary to metabolize phenylalanine to tyrosine.https://www.dailystrength.org/group/phenylketonuria-pku

PKU - Phenylketonuria Home Page

    https://www.pku.com/
    Phenylketonuria (PKU) information. PKU isn’t just a diet thing; it’s a brain thing. Best ways to care for your child with PKU. Protect a developing brain from high blood phenylalanine (Phe) levels. PKU can impact how you think, feel, act, and function. High or unstable blood Phe levels can be managed and improved.https://www.pku.com

Phenylketonuria Contact

    https://contact.org.uk/advice-and-support/medical-information/conditions/p/phenylketonuria/
    It provides information and support to people with Phenylketonuria (PKU) and their families and carers. The Society promotes the care and treatment of PKUs and works closely with medical professionals. It organises events such as conferences and study days throughout the UK, and has a network of local support …https://contact.org.uk/advice-and-support/medical-information/conditions/p/phenylketonuria

Phenylketonuria: Treatment and Support - Hansard

    https://hansard.parliament.uk/commons/2018-06-26/debates/8596DDD2-A3B1-4C8A-BBB8-658BA4332CE9/PhenylketonuriaTreatmentAndSupport
    2018-6-26 · I beg to move, That this House has considered access to treatment, support and innovative new medicines for phenylketonuria patients. It is a pleasure to serve under your chairmanship in this important debate, Mr Robertson.https://hansard.parliament.uk/.../PhenylketonuriaTreatmentAndSupport

Support Us - PKU News - News & Information on …

    https://pkunews.org/support/
    National PKU News is a 501(c)(3) non-profit organization. All donations are tax-deductible to the fullest extent allowed by law. We rely on the support of the PKU Community, and, because our numbers are so small, their friends and family, to continue our work. Please consider making a donation by one...https://pkunews.org/support

PKU Support and Resources KUVAN

    https://www.kuvan.com/support-resources/
    PKU Support and Resources Patient Assistance and Educational Materials. BioMarin is committed to providing programs and resources to help support people with PKU and caregivers along their journeys with PKU. PKU.com—Join the PKU Community. PKU.com is an informative online resource for people living with PKU. Information about PKU and how it ...https://www.kuvan.com/support-resources

Phenylketonuria - Genetics Home Reference - NIH

    https://ghr.nlm.nih.gov/condition/phenylketonuria
    2020-1-21 · Phenylketonuria (commonly known as PKU) is an inherited disorder that increases the levels of a substance called phenylalanine in the blood. Phenylalanine is a building block of proteins (an amino acid) that is obtained through the diet.It is found in all proteins and in some artificial sweeteners. If PKU is not treated, phenylalanine can build up to harmful levels in the body, causing ...https://ghr.nlm.nih.gov/condition/phenylketonuria

Phenylketonuria - NORD (National Organization for Rare ...

    https://rarediseases.org/rare-diseases/phenylketonuria/
    Treatment. The goal of treatment for PKU is to keep plasma phenylalanine levels within 120-360 umol/L (2-6 mg/dL). This is generally achieved through carefully planned and monitored diet.https://rarediseases.org/rare-diseases/phenylketonuria

Phenylketonuria - NHS

    https://www.nhs.uk/conditions/Phenylketonuria/
    Phenylketonuria (PKU) is a rare but potentially serious inherited disorder. Our bodies break down the protein in foods, such as meat and fish, into amino acids, which are the "building blocks" of protein. These amino acids are then used to make our own proteins. Any amino acids that are not needed are broken down further and removed from the body.https://www.nhs.uk/conditions/Phenylketonuria



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