Support organisations

Patient groups and helplines near you, for people with a disease and for their families.

10 organisations for Polycystic kidney disease in United States

Patient groupAll of United States
Genetic and Rare Diseases Information Center
NIH information center (GARD) providing reliable information on genetic and rare diseases to patients and families via website and contact center.
For Glioblastoma, Acute myeloid leukaemia, Hodgkin lymphoma and 32 more
Visit site: nih.gov
Patient groupAll of United States
PKD Foundation
US charity for people affected by polycystic kidney disease, offering education, a Hope Line, peer mentors, local communities, advocacy and research funding.
For Polycystic kidney disease
Visit site: pkdcure.org
HelplineAll of United States
988 Suicide & Crisis Lifeline
US national 24/7 free and confidential lifeline for anyone in suicidal crisis or emotional distress, reachable by calling or texting 988 or by chat.
For any disease
Visit site: 988lifeline.org
Patient groupAll of United States
MedlinePlus
Free, easy-to-read health information service of the US National Library of Medicine (NIH) on diseases, conditions, drugs and wellness.
For any disease
Visit site: medlineplus.gov
Umbrella organisationAll of United States
National Organization for Rare Disorders
US national rare disease alliance of patient organizations: education, patient assistance programs, rare disease database and policy advocacy.
For Glioblastoma, Acute myeloid leukaemia, Childhood cancers and 34 more
Visit site: rarediseases.org
Umbrella organisationEurope
European Kidney Patients' Federation
Federation of national kidney patient organisations: information materials, webinars, annual summit, youth camp, EU advocacy.
For Chronic kidney disease, IgA nephropathy, Polycystic kidney disease
Visit site: ekpf.eu
Umbrella organisationEurope
EURORDIS – Rare Diseases Europe
Alliance of over 1,000 rare disease patient organisations, with a list of rare disease helplines by country.
For Glioblastoma, Acute myeloid leukaemia, Childhood cancers and 35 more
Visit site: eurordis.org
Umbrella organisationInternational
PKD International
Geneva-based international association of national PKD patient groups (also open to clinicians/scientists): ADPKD patient route map, publications, studies, global members meeting.
For Polycystic kidney disease
Visit site: pkdinternational.org
Umbrella organisationEurope
European Patients' Forum (EPF)
Umbrella of European patient organisations and national patient coalitions.
For any disease
Visit site: eu-patient.eu
Umbrella organisationInternational
International Alliance of Patients' Organizations
Global alliance of patient organisations of all diseases, promoting patient-centred healthcare.
For any disease
Visit site: iapo.org.uk