Joining the Rare & Ready Coalition means becoming part of a collaborative network of rare disease organizations working to create change—at no cost to you. Members receive regular email action alerts, access to resources and webinars, and opportunities to stay informed on key policy issues. You can participate at the level that works best for your organization, whether that’s taking quick action when alerts arrive or engaging more deeply in advocacy and collaboration.
- Expectations – Joining the Rare & Ready Coalition is designed to be flexible and accessible. There are no membership fees, and organizations can engage at the level that best fits their capacity. While active participation strengthens our collective impact, we recognize that each organization’s time and resources are different—so involvement can range from sharing alerts within your networks to directly engaging in policy initiatives.
- Leadership – The coalition is guided by a collaborative leadership model. A team through Rx4good coordinates policy updates, develops educational content, and organizes opportunities for engagement. Members are invited to share feedback, propose topics for webinars, and contribute ideas that help shape the coalition’s priorities. Leadership is transparent and inclusive, ensuring that diverse perspectives from across the rare disease community inform our collective work.
- Benefits – Your organization gains timely information, practical tools, and connections that make advocacy more effective. Benefits include:
- Email action alerts on key policy developments and opportunities to make your voice heard.
- Access to ready-to-use templates, toolkits, and outreach materials to support your advocacy work.
- Educational webinars featuring experts, policymakers, and peer organizations.
- Opportunities to connect and collaborate with other rare disease organizations to share best practices.
Current Advocacy Group Coalition Members
22q Family FoundationAdult Polyglucosan Body Disease Research FoundationAiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis)Akari FoundationAlpha 1 MZ FoundationALS Association
Children’s Eye Foundation (American Association for Pediatric Ophthalmology and Strabismus)
American Partnership for Eosinophilic DisordersAngel Aid CaresAngelman Syndrome Foundation, Inc.Association for Creatine DeficienciesAutosomal Dominant Optic Atrophy Association
Batten Disease Support, Research, and Advocacy Foundation (BDSRA)
Ben’s Dream; The Sanfilippo Research FoundationBeyond Primrose ZBTB20 FoundationBlackDoctorBleeding Disorders Alliance IllinoisBonnell FoundationCaring BoardCanavan Research FoundationCASK Warriors Foundation
CF United
Champ 1 Research FoundationChamp Foundation
Children’s Medical Research Foundation
Columbus Children’s Foundation
Cure DuchenneCure JM FoundationCure LBSLCushing Support and Research FoundationDDX3X Foundation
EDS Chicago: Ehlers-Danlos Syndrome Chicago Support and Awareness
Fabry Support & Information Group
Hemophilia Foundation of Southern California
Hereditary Angioedema Association
Hunter’s Hope Foundation, Inc.
Hypertrophic Cardiomyopathy Association
HypoPARAthyroidism Association
Intermountain PKU and Allied Disorders Association
International Coalition of Organizations Supporting Endocrine Patients (ICOSEP)
International Cystinuria Foundation
International Pemphigus & Pemphigoid Foundation
Juju and Friends CLN2 Warrior Foundation
Lennox-Gastaut Syndrome (LGS) Foundation
Louisa Adelynn Johnson Fund for Complex Disease
Lupus and Allied Diseases Association, Inc.
Mid-Atlantic Connection for PKU and Allied Disorders (MACPAD)
Mississippi Metabolics Foundation
Myasthenia Gravis Foundation of America
National Adrenal Diseases Foundation (NADF)
National Foundation for Ectodermal Dysplasias
National Niemann-Pick Disease Foundation (NNPDF)
National Organization of African Americans with Cystic Fibrosis
National Scleroderma Foundation
National Tay-Sachs & Allied Diseases Association (NTSAD)
Network of Tyrosinemia Advocates
NKH Crusaders Research and Patient Advocacy Organization
Oxalosis and Hyperoxaluria Foundation
Prader-Willi Syndrome Association
Rare Disease Innovations Institute (RDII)
Reflex Sympathetic Dystrophy Syndrome Association
Share and Care for Rare Network
Shwachman Diamond Syndrome Foundation
Sickle Cell Disease Association of Illinois (SCDAI)
Sickle Cell Reproductive Health Education Directive
Sickle Cell Warriors of Wisconsin
Siegel Rare Neuroimmune Association
The Hope Project for Kids
Vestibular Disorders Association
Wisconsin Rare Disease Alliance
