Resource List for Rare Patients
Rare Genetic Metabolic Support Organizations and Resources:
https://www.msmetabolics.org
https://ucdfamily.org/about-ucds/
https://www.simd.org/Links/index.asp
https://managementguidelines.net/consumers.php
https://www.inspire.com/groups/organic-acidemia-association/
https://www.biomarin-rareconnections.com
Rare Disease Organizations, Resources, Advocacy, and Education:
https://everylifefoundation.org
https://expectinghealth.org/programs/national-genetics-education-and-family-support-center
https://www.rarediseasesnetwork.org
https://rarediseases.info.nih.gov
https://www.acmg.net/ACMG/Advocacy
https://www.orpha.net/consor/cgi-bin/index.php?lng=EN
https://www.rareadvocacymovement.com
https://www.researchamerica.org
https://www.rareconnect.org/en/communities
Newborn Screening Organizations and Resources:
https://www.babysfirsttest.org
https://expectinghealth.org/programs/newborn-screening-family-education-program
https://www.marchofdimes.org/baby/newborn-screening-blood-screen-infographic.aspx
https://www.cdc.gov/newbornscreening/
https://www.newbornscreening.info
https://www.ncbi.nlm.nih.gov/books/NBK115572/
https://www.savebabies.org/screening.html
Patient Registries for Rare Metabolic Research:
https://www.oaanews.org/oaa-patient-registry.html
https://oaaregistry.iamrare.org
Formula/Low Protein Companies and Nutrition Assistance:
https://www.nutriciametabolics.com/formula-coverage/ \
https://abbottnutrition.com/therapeutic#metabolic
https://www.solacenutrition.com/product-category/conditions/amino-acid-metabolism-disorders/
https://www.cambrooke.com/support/reimbursement/#.YaP7By-B3GJ
https://www.ener-g.com/pages/pku-msud-and-allied-disorder-resources
https://www.pkuperspectives.com
https://www.tasteconnections.com
https://nutritiondata.self.com
https://www.spectrumchemical.com/chemical/amino-acids-and-derivatives
https://www.gnc.com/beyond-raw/beyond-raw-chemistry-labs/
https://gmdi.org/Resources/Leucine-and-Protein-Content-of-Foods
Prescription Drug, Medical, and/or Financial Assistance:
https://medicineassistancetool.org
https://www.patientservicesinc.org/patients/
https://www.patientadvocate.org/connect-with-services/copay-relief/
https://tailormed.co/financial-navigation-resources-for-covid-19/
https://www.healthwellfoundation.org
https://www.istayhomeforrare.org
https://littlezebrafund.org/mission
https://www.cernercharitablefoundation.org
https://www.mygooddays.org/patients/diseases-covered
https://www.mygymfoundation.org/apply-for-a-gift/
https://www.hrsa.gov/get-health-care/affordable/index.html
https://www.ssa.gov/benefits/disability/qualify.html
https://www.usa.gov/benefits-grants-loans
https://www.biomarin-rareconnections.com
Patient Transportation Organizations and Resources:
Patient AirLift Services (PALS): https://palservices.org
Volunteer Pilots Association: https://www.volunteerpilots.net/organizations/
Air Charity Network: https://aircharitynetwork.org
Miracle Flights: https://miracleflights.org
Angel Flight: https://www.angelflight.com
Mercy Medical Angels: https://www.mercymedical.org/request-assistance
Air Care Alliance: https://www.aircarealliance.org
Wings of Hope: https://wingsofhope.ngo/us-medical-transport/
Southwest Airlines Medical Transportation Grants: https://www.southwest.com/html/southwest-difference/community- involvement/charities/medical_transportation.html
Chair Flights: https://www.iflymat.org
Charity Care Group: https://www.charitycaregroup.org
Charity Air Ambulance: https://charityairambulance.com
Grace On Wings: https://www.graceonwings.org
Managed Medical Transport: https://mmtamerica.com
Lifeline Pilots: https://lifelinepilots.org
Children’s Flight of Hope: https://childrensflightofhope.org
Corporate Angel Network: https://www.corpangelnetwork.org
General Disability Organizations and Resources:
https://www.respectabilitylawcenter.com/index.htm
https://www.ssa.gov/benefits/disability/qualify.html
https://www.parentcenterhub.org
Emergency Preparedness and Disaster Resources:
https://southeastgenetics.org/for-families/emergency-preparedness-planning/
https://www.cdc.gov/prepyourhealth/index.htm
https://www.fda.gov/emergency-preparedness-and-response
https://oley.org/page/Be_Prepared
https://oley.org/page/Getting_Ready_for_a_Natural_Disaster
https://cdn.ymaws.com/oley.org/resource/resmgr/docs/hpen_natural_disasters_ncp.pdf
https://www.medicalert.org/nord
Other Helpful Patient Support Resources:
https://courageousparentsnetwork.org
https://www.caregiving.org/guidebook-for-caregivers-of-children-with-rare-serious-illnesses/
https://www.bensfriends.org/community-list/
https://givingangelsfoundation.org/apply-for-help/
https://www.someonespecialbooks.com
https://www.feedingtubeawareness.org
https://www.cms.gov/Outreach-and-Education/Outreach-and-Education https://www.kff.org/statedata/ (State Health Facts)
Resources for Mississippi:
https://www.umc.edu/Childrens/Childrens-Home-Page.html
https://www.mdrs.ms.gov/SpecialPrograms/Pages/default.aspx
https://www.msdisabilities.com
https://www.mississippiaccesstocare.org/help-info/programs-services
https://www.msprojectstart.org
https://www.mde.k12.ms.us/special_education/info_pubs.html
https://southeastgenetics.org/state-resources/mississippi/
https://www.usm.edu/ids/wellness-family2family.php
This is not an exhaustive list and this resource will periodically be updated on our website, https://www.msmetabolics.org.