Information Resources for Selected Conditions
Hereditary Cancer
General information about hereditary cancer
- Colorado Cancer Genetics Alliance - http://cocancergenetics.org/understanding-hereditary-cancer/
- Cancer Genetics Video - https://www.youtube.com/watch?v=MI0pDkjVOxI
- Kintalk - empowering families with hereditary cancers through communication and education - https://kintalk.org/
Breast and ovarian cancer (HBOC) syndromes
- FORCE: Facing Our Risk for Cancer Empowered - https://www.facingourrisk.org/
Colon cancer syndromes
Lynch syndrome
- Colorectal Cancer Alliance: Lynch syndrome - https://www.ccalliance.org/screening-prevention/family-history/lynch-syndrome
- CCARE: Colon Cancer Alliance for Research and Education for Lynch syndrome - www.fightlynch.org
- AliveAndKickn: A Lynch syndrome hereditary cancer advocacy organization - www.aliveandkickn.org
Polyposis syndromes
- Polyposis Patient - https://polyposispatient.support/
- Colorectal Cancer Alliance: FAP syndrome - https://www.ccalliance.org/screening-prevention/family-history/fap-syndrome
Hereditary paraganglioma/pheochromocytoma syndromes
- Pheo Para Alliance - https://pheopara.org/education/genetics
Endocrine Neoplasia syndromes
- Neuroendocrine Tumor Research Foundation - https://netrf.org
- AMEND: Association for multiple endocrine neoplasia disorders - https://www.amend.org.uk
Li-Fraumeni syndrome
- LFSA: Li-Fraumeni syndrome association - www.lfsassociation.org
Neurofibromatosis
- Neurofibromatosis Network - https://www.nfnetwork.org/
PTEN hamartoma tumor syndrome
- PTEN Hamartoma Tumor Syndrome Foundation - www.ptenfoundation.org
Retinoblastoma
- WECOPE: World Eye Cancer Hope - https://wechope.org/retinoblastoma/resources/retinoblastoma-communities-social-media/
Tuberous Sclerosis
- TSC Alliance - www.tscalliance.org
Von Hippel Lindau syndrome
- VHL Alliance - www.vhl.org
- Neuroendocrine Tumor Research Foundation - https://netrf.org/
Wilms tumor
- Wilms Cancer Foundation - https://www.wilmsfoundation.org/resource
Inherited Heart (Cardiac) Conditions
Cardiomyopathy
- General information about cardiomyopathy - https://medlineplus.gov/cardiomyopathy.html
- American Heart Association - What is Cardiomyopathy in Adults? - https://www.heart.org/en/health-topics/cardiomyopathy/what-is-cardiomyopathy-in-adults
Dilated Cardiomyopathy
- DCM Foundation - https://dcmfoundation.org/
- American Heart Association - Dilated Cardiomyopathy (DCM) - https://www.heart.org/en/health-topics/cardiomyopathy/what-is-cardiomyopathy-in-adults/dilated-cardiomyopathy-dcm
Hypertrophic Cardiomyopathy
- Hypertrophic Cardiomyopathy Association - www.4hcm.org
- UCHealth – About Hypertrophic Cardiomyopathy - https://www.uchealth.org/services/heart-and-vascular-care/diseases-and-conditions/85,P00201/
- American Heart Association - Hypertrophic Cardiomyopathy (HCM) - https://www.heart.org/en/health-topics/cardiomyopathy/what-is-cardiomyopathy-in-adults/hypertrophic-cardiomyopathy
Arrhythmia
- General information about arrhythmia - https://medlineplus.gov/arrhythmia.html
- UCHealth Cardiac Electrophysiology - https://www.uchealth.org/services/heart-and-vascular-care/diseases-and-conditions/85,P00195/
Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC)
- Cedars-Sinai – About ARVC - https://www.cedars-sinai.org/health-library/diseases-and-conditions/a/arrhythmogenic-right-ventricular-dysplasia.html
Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT)
- Cedars-Sinai – About CPVT - https://www.cedars-sinai.org/health-library/diseases-and-conditions/c/catecholaminergic-polymorphic-ventricular-tachycardia.html
Long QT syndromes
- Sudden Arrhythmia Death Syndromes Foundation (SADS) – https://sads.org/sads-conditions/long-qt-syndrome/
Aortopathies: Familial Thoracic Aortic Aneurysm & Aortic Dissection Syndrome and Marfan Syndrome
- The Marfan Foundation - https://marfan.org/conditions/familial-aortic-aneurysm
Ehlers-Danlos Syndrome
- Ehlers-Danlos syndrome – vascular type - https://www.ehlers-danlos.com/what-is-eds/vascular-ehlers-danlos-syndrome-veds/
Fabry Disease
- National Fabry Disease Foundation - https://www.fabrydisease.org/index.php
Familial Hypercholesterolemia (FH)
- Family Heart Foundation - https://familyheart.org/familial-hypercholesterolemia
- National Library of Medicine Medline Plus – Familial Hypercholesterolemia - https://medlineplus.gov/ency/article/000392.htm
Hereditary Amyloidosis
- Amyloidosis Foundation - https://amyloidosis.org/facts/familial
- Amyloidosis Research Consortium - Hereditary ATTR Amyloidosis - https://arci.org/about-amyloidosis/hereditary-attr-amyloidosis/
Hereditary Hemorrhagic Telangiectasia
- Cure HHT - https://curehht.org/
Leber Congenital Amaurosis (RPE65-related retinopathy)
- Hope in Focus - https://hopeinfocus.org/
Loeys-Dietz Syndrome
- Loeys-Dietz Syndrome Foundation - https://loeysdietz.org
Malignant Hyperthermia
- Malignant Hyperthermia Association of the United States (MHAUS) - https://www.mhaus.org/patients-and-families/
- Mayo Clinic – Malignant Hyperthermia - https://www.mayoclinic.org/diseases-conditions/malignant-hyperthermia/symptoms-causes/syc-20353750
Maturity-Onset Diabetes of the Young (MODY)
Pompe Disease
- Pompe & You - https://pompeandyou.com/
Wilson Disease
- Wilson Disease Association - https://wilsondisease.org/
Rare Genetic Conditions
- National Organization for Rare Disorders (NORD) – www.rarediseases.org
- GeneReviews - https://www.ncbi.nlm.nih.gov/books/NBK1116/
Biotinidase Deficiency
Ornithine Transcarbamylase (OTC) Deficiency (X-linked)