Resource Hub
Everything you need.
All in one place.
Organizations, medications, financial assistance, and insurance support — curated for the rare disease community.
Organizations & Partners
Vasculitis · Organization
Vasculitis Foundation
The leading organization for vasculitis patients — research, education, and community support.
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Vasculitis · News
ANCA Vasculitis News
Latest news, research, and patient stories for ANCA vasculitis patients.
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Vasculitis · Education
ANCA 101
Education and support resources specifically for ANCA vasculitis patients.
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Vasculitis · Treatment
Tavneos
FDA approved treatment for GPA and MPA vasculitis.
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Vasculitis · Research
Patient Powered Research
Research initiatives driven by vasculitis patients and their care partners.
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EGPA · Support
AZ Patient Support
AstraZeneca patient support program for EGPA patients on Fasenra.
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EGPA · Treatment
Fasenra for EGPA
FDA approved biologic treatment specifically for EGPA.
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EGPA · News
ANCA Vasculitis News
Latest news and research covering EGPA and other ANCA vasculitis diseases.
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EGPA · Organization
Vasculitis Foundation
Resources, community, and research support for all vasculitis patients including EGPA.
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IgG4 · Community
IgG4-RD Outloud
Patient community and advocacy for IgG4-related disease.
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IgG4 · Organization
IgG4ward
Nonprofit dedicated to IgG4-RD awareness, education, and research.
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IgG4 · News
IgG4-RD News
Latest research and news on IgG4-related disease.
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IgG4 · Support
Amgen By Your Side
Patient support program for Uplizna, FDA approved for IgG4-RD.
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IgG4 · Research
Mission Cure
Focused on autoimmune pancreatitis and IgG4-RD research and awareness.
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IgG4 · Organization
Vasculitis Foundation — IgG4
IgG4-RD specific resources from the Vasculitis Foundation.
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MG · Organization
Myasthenia Gravis Foundation
The leading national organization for MG patients — advocacy, research, and support.
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MG · Education
MyastheniaGravis.org
Education, resources, and financial assistance for MG patients.
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MG · News
Myasthenia Gravis News
Latest research, treatment updates, and patient stories for MG.
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MG · Community
More Than MG
Patient community and support resources for living with myasthenia gravis.
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MG · Holistic
MG Holistic Society
Holistic approaches and complementary care for myasthenia gravis patients.
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MG · Community
MG United
Community platform connecting MG patients across the country.
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NMOSD · Organization
Patient Health Alliance
Support and resources for patients navigating rare neuroimmune conditions including NMOSD.
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NMOSD · Organization
Sumaira Foundation
Global nonprofit focused on awareness, education, and advocacy for NMOSD and related rare neuroimmune disorders.
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NMOSD · Research
Guthy Jackson Research Foundation
Funds and coordinates research aimed at understanding and curing NMO/NMOSD.
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NMOSD · Organization
Siegel Rare Neuroimmune Association
Support, education, and research for patients with rare neuroimmune disorders including NMOSD.
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Medications & Treatments
FDA approved brand name drugs and generic/off-label medications by disease. Click any brand name drug to visit the manufacturer site for information on use, side effects, and financial support programs.
FDA Approved
Rituxan
FDA Approved
Tavneos
FDA Approved
Fasenra
FDA Approved
Actemra
FDA Approved
Kevzara
FDA Approved
Nucala
FDA Approved
Ruxience
FDA Approved
Rinvoq
FDA Approved
Generic & Off-Label
FDA Approved
Generic & Off-Label
FDA Approved
Generic & Off-Label
Financial Assistance Programs
These funds vary and can change frequently. Check back regularly — if funds aren't available today, they may be tomorrow.
GoodRx
Prescription discount cards and price comparison tool for most medications.
PAN Foundation
Independent assistance for Medicare patients with life-threatening, chronic, and rare diseases.
HealthWell Foundation
Disease-specific funds covering insurance premiums, copays, and cost-sharing.
NORD Patient Assistance
Rare disease-specific financial assistance programs from the National Organization for Rare Disorders.
NeedyMeds
Database of patient assistance programs, drug discount programs, and other healthcare resources.
RxHope
Connects patients to manufacturer patient assistance programs for free or low-cost medications.
RxOutreach
Nonprofit pharmacy offering low-cost medications to those who qualify.
TAF — The Assistance Fund
Financial assistance for patients with life-threatening, chronic, and rare diseases.
Medicine Assistance Tool
PhRMA tool to find patient assistance programs from pharmaceutical manufacturers.
SingleCare
Free prescription savings card accepted at major pharmacies nationwide.
WellRx
Prescription savings card with discounts at over 65,000 pharmacies.
Medicare Part D
Medicare drug coverage program — find plans and understand your benefits.
Medicare & Insurance
Short, easy-to-watch videos that break down Medicare from a rare disease patient perspective. Thanks to Amgen & AstraZeneca for supporting this series.
Overview
Medicare for Rare Disease Overview
Tips
Tidbits & Helpful Hints
Part B
Part B & Prior Authorization
Part C
Medicare Advantage (Part C)
Part D
Drug Coverage (Part D)
Supplemental
Medigap / Supplemental Insurance
The website referenced throughout these videos is Medicare.gov. Still have questions? Contact us — we want to hear from you.
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