MTG1:
Adrenal
Information on rare disease
- Adrenogenitaal syndroom (AGS) – BijnierNET (NL)
- Senter for sjeldne diagnoser (NO)
- Qué es la hiperplasia suprarrenal congénita – Hiperplasia suprarrenal congénita – Asociación española HSC (hiperplasiasuprarrenalcongenita.org) (ES)
- Hyperplasie Congénitale des Surrénales – Association Surrénales (surrenales.com) (FR)
- HyperplasieCongenitaleSurrenale-FRfrPub648v01.pdf (orpha.net) (FR)
- Introduzione – ArfSAG ISC ONLUS iperplasia surrenalica congenita (airisc.org) (IT)
- Associazione I.S.C. ONLUS Lombardia (IT)
- Adrenogenitales Syndrom – www.endokrinologie.net (DE)
- AGS Foreningen | Hvad er AGS ? (DK)
- Kongenital binjurebarkshyperplasi – Socialstyrelsen (SE)
- Vardprogram för kongenital binjurebarkhyperplasi(pdf) (SE)
- Harvinaisten endokrinologisten sairauksien hakukone | Harvinaissairaudet.fi | Terveyskylä.fi (terveyskyla.fi) (FI)
- Video: Information CAH bulgarian with Prof. Violeta Iotova
Educational materials/Information for school, travel etc.
- Medical certificate can be found here.
- Adrenal-APP – Adrenals.eu/de (available in several languages)
- European Emergency card – Adrenals.eu (available in several languages)
- SOS -materialien
- Animations – Adrenals.eu
Norway
- CAH-veileder_18.pdf (oslo-universitetssykehus.no)
- CAH_Barnehage_Skole_20.pdf (oslo-universitetssykehus.no)
- Skolestartboka_2021_til nett_mindre.pdf (oslo-universitetssykehus.no)
Spain
- GUIA-HIPERPASIA-SUPRARRENAL.pdf (hiperplasiasuprarrenalcongenita.org)
- Triptico guía para familiares y pacientes HSC (hiperplasiasuprarrenalcongenita.org)
- Hiperplasia suprarrenal congénita – Encuentros Virtuales con la Comunidad Hospital Posadas – YouTube
France
- Association Française sur les maladies des surrénales reconnue d’intérêt général (surrenales.com)
- InsuffisanceSurrenalienneAigue_FR_fr_EMG_ORPHA95409.pdf
- Insuffisance surrénale (solidarites-sante.gouv.fr)
- HyperplasieCongenitaleSurrenale-FRfrPub648v01.pdf (orpha.net)
- Note d’Information aux couples à risque (surrenales.com)
- HYPERPLASIE FR congenitale L 6 – LECTURE FACILE 23 AVRIL 09 (surrenales.com)
- HYPERPLASIE FR congenitale L6 LECTURE MOYENNE 23 AVRIL 09 (surrenales.com)
- HCS enf+8 ans version 22 03 (surrenales.com)
- Injection d’hydrocortisone en sous cutanée en cas d’urgence – Association Surrénales (surrenales.com)
Denmark
- AGS Foreningen | Hvad er AGS
- AGS Foreningen | Det virkelige liv
- AGS Foreningen | Pjecer
- AGS Foreningen | Addison krisekort
- AGS Foreningen | Referater af foredragsholdere
Switzerland
- Gesundheitscheckliste_fileadmin/PDF/AGS_Checkliste_D_2016–1.pdf (ags-initiative.ch)
- Gesundheitscheckliste french_fileadmin/PDF/AGS_Checkliste_F_2016.pdf (ags-initiative.ch)
- Notfallausweis_stresshormonmangel.pdf (insel.ch)
- SOS Kapseln_Germann-Medical | Chrom
United Kingdom
- Microsoft Word – CAHInfoLeaflet_Bham.docx (livingwithcah.com)
- Non-Classical-CAH-Leaflet-2019.pdf (livingwithcah.com)
- Adrenal crisis | Society for Endocrinology
- congenital-adrenal-hyperplasia-cah-web-version.pdf (bsped.org.uk)
- Medical Advisors | Living with CAH
- Updated NHS Steroid Card Released | Living with CAH
- Microsoft Word – Ambulance_intro_and_letter_template.docx (livingwithcah.com)
- Microsoft Word – CAH School letter.doc (livingwithcah.com)
- Medical Alert Bracelets, Necklaces & More | American Medical ID (universalmedicalid.co.uk)
- TabTime – Medication Management Products – Tabtime Limited
- paediatric-steroid-treatment-card.pdf (endocrinology.org)
- steroid-card.pdf (endocrinology.org)
- What is Congenital Adrenal Hyperplasia (CAH)? – Bing video
- Understanding Congenital Adrenal Hyperplasia (CAH) – Jumo Health – Bing video
Bulgaria
- Adrenal crisis – information for adult patients (pdf)
- Adrenal insuficiency-patient card for children (pdf)
- Adrenal insuficiency-patient leaflet for children (pdf)
- Treatment of adrenal crisis of children (pdf)
- CAH Patient Leaflet 1 (pdf)
- CAH Patient Leaflet 2 (pdf)
- Individuel Health Care Plan for Kindergarten and school (pdf)
The Netherlands
- Ouders van een basisschoolkind met AGS – themapagina – BijnierNET
- Zorg voor opgroeiende kinderen met een bijnieraandoening – Transitie – BijnierNET
- Ouders van een baby met AGS – Themapagina – BijnierNET
- Themapagina – volwassenen met AGS – BijnierNET
- Zorgpad AGS – Radboudumc
- DSD Nederland
- Cyberpoli
Patient training/educationtool:
- Adrenogenitaal syndroom – Radboudumc
- Bijnieren en bijnieraandoeningen – Overview | Rise 360 (articulate.com)
- Praktijksituaties voor jongeren – Overview | Rise 360 (articulate.com)
- Praktijksituaties voor jongeren – Overview | Rise 360 (articulate.com)
Germany
- Klassisches AGS (AGS- Eltern- und Patienteninitiative, pdf)
- Nicht-klassisches AGS (AGS- Eltern- und Patienteninitiative, pdf)
- Lisa und Paul (AGS- Eltern- und Patienteninitiative, pdf)
- AGS und Sport (Prof. Dr. Bonfig, pdf)
- Transition (Prof. Dr. Reisch, pdf)
- Notfallausweis AGS (Kinder/Schule/ Verein, Prof. Dr. Bonfig, pdf)
- AGS.pdf (leaflet glandula)
Patient training:
- Information for adults: Flyer Endokrinologische Patientenschulungen_210x210.indd (uni-muenchen.de)
- Information for parents/children/young adults: Fly_Schulungen_0221_web.pdf (charite.de)
Sweden
Finland
Videos on YouTube in english:
- CoMICs Episode 7: Congenital Adrenal Hyperplasia (CAH) – YouTube
- Happy and Healthy with CAH – YouTube
Patient organizations
United Kingdom:
- CAH Support Group, Living with CAH, Living with CAH
Germany:
- AGS-Eltern-und Patienteninitiative e.V.
- Netzwerk Hypophysen- und Nebennierenerkrankungen e.V. Glandula Online: Startseite (glandula-online.de)
France:
The Netherlands
Norway:
Ireland:
Italy
- ArfSAG-ISC, ArfSAG Home Page – ArfSAG ISC ONLUS iperplasia surrenalica congenita (airisc.org)
- Associazione I.S.C. ONLUS Lombardia