Rare Diseases
General
- https://rarediseases.org/
- https://marrvel.org/
- https://rarediseases.info.nih.gov/
- https://globalgenes.org/
- https://ncats.nih.gov/research/research-resources/ncats-toolkit
- https://registries.ncats.nih.gov/
- https://undiagnosed.hms.harvard.edu/
- https://www.rarediseasesinternational.org/collaborative-global-network/
- https://www.childneurologyfoundation.org/ – specific to children
- https://www.orpha.net/ – includes orphan drugs
- https://triagehealth.org/ – covers some healthcare laws
- https://udnf.org/
- https://www.tgen.org/patients/center-for-rare-childhood-disorders/stories/resources-for-parents-of-children-with-rare-conditions/ – specific to children
- https://rareshare.org/
- https://www.ga4gh.org/community/rare-disease/
- https://www.mygene2.org/MyGene2/
- https://www.rareconnect.org/en
- https://www.clinicalgenome.org/genomeconnect/for-patients-genomeconnect/
- https://geneticalliance.org/
Muscular Dystrophy
- https://www.myotonic.org/
- https://www.fshdsociety.org/
- https://www.parentprojectmd.org/
- https://www.mda.org/
Cystic Fibrosis
- https://www.cff.org/
- https://www.cfri.org/
- https://www.esiason.org/
- https://clairesplacefoundation.org/
- https://breathestrongcf.org/
Huntington’s Disease
- https://www.huntington-disease.org/
- https://hdfoundation.org/
- https://chdifoundation.org/
- https://huntingtonstudygroup.org/
- https://hdsa.org/
Sickle Cell
- https://www.sicklecelldisease.org/
- https://www.scdfc.org/
- https://curesickle.org/
- https://www.hematology.org/ash-center-for-sickle-cell-disease-initiatives
Hemophilia
Women’s Health Resources
Pregnancy
- https://www.marchofdimes.org/find-support/topics/pregnancy/preeclampsia
- https://www.marchofdimes.org/find-support/topics/pregnancy/bleeding-and-spotting-vagina-during-pregnancy
- https://www.sciencedirect.com/science/article/pii/S0002937823002600?via%3Dihub
- https://pubmed.ncbi.nlm.nih.gov/36484095/
- https://pubmed.ncbi.nlm.nih.gov/35241475/
- https://www.aafp.org/pubs/afp/issues/2011/0515/p1211.html
- https://www.aafp.org/dam/AAFP/documents/patient_care/clinical_recommendations/AAFP%20PVBAC%20guideline.pdf
- https://mchb.hrsa.gov/national-maternal-mental-health-hotline#:~:text=The%20National%20Maternal%20Mental%20Health,833%2D852%2D6262).
- https://effectivehealthcare.ahrq.gov/products/cesarean-birth-2010/research?_gl=1*qdhc5w*_ga*NjcyMTMxNTQ3LjE3NjE4Mzg5NjU.*_ga_1NPT56LE7J*czE3NjE4Mzg5NjQkbzEkZzEkdDE3NjE4MzkyMzckajYwJGwwJGgw
Reproductive/Sexual Health
- https://www.reproductiveaccess.org/resource/iud-facts/
- https://opa.hhs.gov/adolescent-health/adolescent-sexual-and-reproductive-health/reproductive-health-services-and
- https://www.asrm.org/
- https://reproductiverights.org/
- https://www.reproductiveaccess.org/wp-content/uploads/2014/12/2022-03-Early-Abortion-Options-1.pdf
- https://www.reproductiveaccess.org/wp-content/uploads/2014/06/2020-09-contra-choices.pdf
- https://www.reproductiveaccess.org/wp-content/uploads/2014/12/chart.pdf
- https://www.aafp.org/pubs/fpm/issues/2019/0700/p19.html
- https://www.aafp.org/about/policies/all/rights-survivors-sexual-assault.html