Resources

The National Organization for Rare Disorders (NORD) is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service. They provide many resources for people living with rare diseases, their families and other advocates.

• RareCare® provides patient assistance programs to help individuals living with rare diseases obtain medication, receive financial help with insurance premiums and co-pays, get diagnostic getting assistance, receive travel assistance for clinical trials or consultation with disease specialists, provide caregiver respite and connect with other patient assistance programs.

Global Genes is a leading rare disease patient advocacy organization whose mission is to connect, empower, and inspire the rare disease community. With international scope, Global Genes develops educational resources, programs, and events that unite patients, advocates, and industry experts.

• RARE Concierge patient services provides resources, education and important connection free of charge, including: help getting to a diagnosis, finding a specialist or care resources, understanding research or clinical trials in your disease, locating social, emotional or mental support, identifying financial resources to help with treatment, travel or care.
• RARE Impact Grant provides grants to rare disease patient advocacy organization to make specific, tangible difference for the communities they serve.
• Global Genes RARE Patient Advocacy Summit is the largest rare patient advocate event worldwide, Global Genes’ summit gathers hundreds of patients, caregivers, advocates, and rare disease stakeholders to become immersed in rare disease advocacy, gain valuable knowledge, and forge meaningful partnerships. With the help of sponsorships, advocates from all over the globe are afforded travel and lodging scholarships to attend the summit. Email events@globalgenes.org for scholarship information.

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 100 rare disease patient organizations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilizing the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.

Miracle Flights provides financial assistance to low-income children for commercial air travel to obtain special medical care. Qualifying families can receive travel assistance for the child patient and up to two parents or legal guardians.

Good Days is an organization that works to improve the health and quality of life of patients with chronic disease, cancer, or other life-altering conditions. The organization may help provide families with financial and travel assistance.

The HealthWell Foundation is an independent nonprofit dedicated to reducing financial barriers to care for underinsured Americans with chronic and life-altering medical conditions. By assisting with their cost-sharing obligations, HealthWell offers a financial lifeline to adults and children who desperately need critical medical treatments but can’t afford them.

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. We do not speak for patients. We provide the training, education, resources and opportunities to make their voices heard. By activating the patient advocate, we can change public policy and save lives.

• #RAREis Scholarship Fund will support the pursuit of life enrichment activities for adults living with rare diseases for a variety of educational pursuits, including educational courses and obtaining two-and four-year degrees. All scholarship recipients will be selected by an EveryLife Foundation-appointed, independent board of reviewers. To learn more, visit https://everylifefoundation.org/rare-scholarship/

The Assistance Fund is an independent charitable patient assistance organization that provides support for adults and children with rare and chronic diseases. The organization may help provide families with financial and travel assistance.

Gift of Adoption is a national 501(c)(3) charity that provides the final funds needed to complete the adoptions of vulnerable children. The organization awards grants of up to $10,000 to provide families – regardless of race, religion, age, marital status, or sexual orientation – the financial support needed to bring their children home. Gift of Adoption prioritizes grants for those adopting the most vulnerable children facing what is likely their last or only chance at adoption. This includes grants that keep biological siblings in the same family, prevent children from unnecessarily entering foster care or aging out of orphanages, or complete the adoptions of children with critical medical conditions.

• The #RAREis Adoption Fund supports Gift of Adoption’s mission to provide financial assistance to complete the final steps of adoption of at-risk children. Amgen’s three-year commitment will support the adoption of more than 70 children living with rare diseases. To learn more, visit https://giftofadoption.org/rareis/

Our Odyssey connects young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life.

The story of a life impacted by rare disease and captured in song. In partnership with the Sing Me a Story Foundation, Amgen’s #RAREis Playlist is elevating the stories of children living with rare diseases by transforming them into songs. Stories written by the children themselves are delivered to professional songwriters and musicians, who tell them through a very special song made just for them. Visit #RAREis Playlist to download the songs.

The Akari Foundation educates and empowers the Hispanic rare disease community and provides resources and educational webinars in Spanish and English.

Give An Hour supports caregivers and families impacted by rare diseases through one-on-one peer support, group support, professional training, counseling and research.

Patient Helpline provides services for patients, caregivers and their families to guide them through complex healthcare issues and challenges, including transportation, financial services, insurance, access to medicine and access to care.

SHER is dedicated to empowering Hispanic families affected by rare diseases. They provide education, advocacy and resources in Spanish, particularly focusing on bridging the gap in awareness and support for this community. SHER also works to amplify the voices of Hispanic individuals navigating rare disease journeys, as seen in their “Más Que Raras” podcast.