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12:12 Foundation

The 12:12 Foundation is a nonprofit organization committed to supporting and advocating for individuals and families affected by Sickle Cell Disease (SCD). Through education, outreach, and community engagement, the foundation works to enhance the quality of life for those living with SCD and raises awareness about the disease's impact on affected individuals and their communities.

https://www.facebook.com/p/1212-Foundation-Inc-100064708985171/

Condition-specific Resources

AAMDS

The Aplastic Anemia & MDS International Foundation is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndrome (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases. The Foundation provides answers, support, and hope to thousands of patients and their families around the world.

https://www.aamds.org/

Condition-specific Resources

Advancing Sickle Cell Advocacy Project (ASAP)

Founded in 2015, A.S.A.P. is a nonprofit organization dedicated to changing the narrative around Sickle Cell Disease through raising awareness, community education, and effective advocacy for those affected by the condition. Their mission involves bridging the gap between the medical community and sickle cell clients, ensuring they receive the support and understanding they deserve.

https://www.advancingsicklecelladvocacyproject.org/

Condition-specific Resources

Air Care Alliance

Air Charity Network is a charitable organization that provides access for people in need who are seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis. http://aircharitynetwork.org/request-a-flight/

Financial

Alzheimer's Association

The Alzheimer's Association provides national and local care and support for those affected by Alzheimer's and other dementias, advocates for Alzheimer's research and care initiatives, and is the largest nonprofit funder of Alzheimer's research. They are dedicated to advancing research for treatment, prevention, and a cure.

https://www.alz.org/

Condition-specific Resources

Alzheimer's OC

Since 1982, Alzheimer’s Orange County has been Orange County’s center for Alzheimer’s resources. They are dedicated to providing quality care and support services to the thousands of residents of Orange County who are affected by Alzheimer’s disease or other related dementia, and also partnering with local researchers to populate clinical trials to help find a cure.

https://www.alzoc.org/

Condition-specific Resources

American Kidney Fund (AKF)

The American Kidney Fund is the leading nonprofit dedicated to combating kidney disease for 37 million Americans and those at risk. Their broad range of programs helps people at every stage of their fight against kidney disease, from prevention to post-transplant care.

https://www.kidneyfund.org/

Condition-specific Resources

American Parkinsons Disease Association

The American Parkinson Disease Association (APDA) is a national grassroots network committed to supporting the one million individuals with Parkinson's disease in the United States. Since its founding in 1961, APDA has dedicated over $252 million to patient services, education, awareness, and research, all aimed at improving the lives of those with PD and finding a cure.

https://www.apdaparkinson.org/

Condition-specific Resources

Breast Cancer Research Foundation

The Breast Cancer Research Foundation (BCRF) is committed to advancing the fight against breast cancer through groundbreaking research. Founded in 1993, BCRF is dedicated to funding innovative studies and supporting scientists in their pursuit of better prevention strategies, more effective treatments, and ultimately, a cure for breast cancer. With a strong focus on research, BCRF has contributed significantly to improving the lives of those affected by breast cancer and remains a vital force in the global fight against this disease.

https://www.bcrf.org/

Condition-specific Resources

Bridging the Gap Sickle Cell Disease Foundation

B.T.G (BridgingThe Gap Adult SCD Foundation) is a nonprofit organization focused on bridging the gaps in support and care for adults living with Sickle Cell Disease (SCD). Through advocacy, education, and community engagement, they work to improve the quality of life for adult SCD patients, ensuring they have the resources and support needed to thrive.

https://ascdfofnv.org/

Condition-specific Resources

CARES Foundation

The CARES Foundation leads the effort to improve the lives of the Congenital Adrenal Hyperplasia (CAH) community through support, advocacy, education, and research. They aim to increase awareness of CAH within the healthcare community to address the historical underservice and lack of support for this condition.

https://caresfoundation.org/

Condition-specific Resources

CancerCare

CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. https://www.cancercare.org/financial_assistance

Financial

Caregiver Action Network

Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. provides education, peer support, and resources to family caregivers across the country free of charge.

Caregiver

Cargivers for Compromise

Caregivers for Compromise is a nationwide coalition advocating for safe and reasonable visitation policies in long-term care facilities, addressing the adverse effects of prolonged isolation on residents. They seek to establish legislation that balances the need to protect against COVID-19 with the well-being and mental health of long-term care residents, preventing the harm caused by extended isolation.

https://caregivers4compromise.com/

Condition-specific Resources

Center for Parent Information & Resources

Supporting the Parent Centers Who Serve Families of Children with DisabilitiesFind Your Center: https://www.parentcenterhub.org/find-your-center/

Caregiver

Champions for HD

Champions for HD, founded in 2018 by Shelby Lentz, is a non-profit organization dedicated to fighting Huntington's Disease. Their mission includes advocating for a cure, providing financial assistance to those affected, raising awareness, offering support to impacted families, and contributing to promising HD research.

https://www.championsforhd.org/

Condition-specific Resources

Children's Flight of Hope

Provides air transportation to and from medical facilities in the eastern United States for seriously ill and injured children and an accompanying adult.

https://childrensflightofhope.or
g/

Financial

Chinese Organization for Rare Disorders

Provides similar services as GARD only they will know more about the resources and medical specialists available in China. You may call 010-67500717 or visit their website for assistance.


http://www.raredisease.cn/

International

Community Liver Alliance (CLA)

The Community Liver Alliance (CLA) focuses on liver disease awareness, prevention, education, advocacy, and research. Supported by a network of patients, caregivers, healthcare professionals, and community leaders, CLA collaborates with stakeholders and policy makers to address various liver-related issues and aims to eliminate disparities in liver disease through harm reduction, education, and access to care.

https://communityliveralliance.org/

Condition-specific Resources

Corporate Angel Network (CAN)

Arranges free travel on corporate jets for cancer patients, bone marrow donors, bone marrow recipients, stem cell donors, and stem cell recipients.

https://www.corpangelnetwork.org/#/ho
me

Financial

Cortney Vega Sports Athletic Foundation (CVSAF)

The Cortney Vega Sports Athletic Foundation (CVSAF) is a nonprofit organization that focuses on providing support and resources to individuals and communities affected by Sickle Cell Disease (SCD). Through advocacy, education, and sports engagement, CVSAF seeks to improve the well-being of those living with SCD while promoting awareness and understanding of this condition.

https://www.facebook.com/CortneyVegaFoundation/

Condition-specific Resources

Crisis Text Line

Text HOME to 741741 from anywhere in the US, anytime. A live, trained Crisis Counselor receives the text and responds, all from a secure platform

Crisis

CureDuchenne

CureDuchenne's primary mission is to accelerate research and provide support for individuals affected by Duchenne muscular dystrophy. They actively work towards finding therapies and ultimately a cure for Duchenne while offering essential resources and advocating for improved care for those living with this condition.

https://cureduchenne.org/

Condition-specific Resources

Dreamsickle Kids

Dreamsickle Kids' mission is to increase awareness and support families affected by Sickle Cell Disease and Rare Diseases in Nevada. They collaborate with organizations, advocate for improved healthcare access, and have achieved legislative milestones to better serve the community, all while fostering education and understanding about these conditions among medical providers and the broader population.

https://dreamsicklekids.org/

Condition-specific Resources

EURORDIS International Rare Diseases Help Lines

Lists rare disease helplines for countries around the world that help people living with a rare disease find information and support. EURORDIS is a patient-driven alliance of organizations representing more than 900 rare disease patient organizations in more than 70 countries throughout Europe.

https://www.eurordis.org/content/rare-disease-help-lines

International

Fading Memories

Fading Memories is a podcast that offers supportive conversations, helpful resources, and true stories for those navigating the challenges of caring for loved ones with memory loss, especially Alzheimer's. It provides answers to daily questions and a sense of community for listeners on the journey of Alzheimer's disease.

https://fadingmemoriespodcast.com/

Condition-specific Resources

Family Caregiver Alliance

FCA CareNav is a secure online service for quality information, support, and resources for family caregivers of adults with chronic physical or cognitive conditions such as Alzheimer’s, stroke, Parkinson’s, and other illnesses.
https://fca.cacrc.org/logi
n CareNav is available for family caregivers everywhere, including those who live in the San Francisco Bay Area, across the U.S. and internationally.

Caregiver

Family Voices

Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities.  We connect a network of family organizations across the United States that provide support to families of CYSHCN.
https://familyvoices.org
/

Caregiver

Feeding America

The Feeding America nationwide network of food banks and food programs helps millions of people find food and groceries in their communities every year. Connect with your local food bank to learn about upcoming free food distributions and to apply for national food programs like SNAP and WIC. https://www.feedingamerica.org/find-your-local-foodbank

Food and Housing Security

Find a Helpline (APIs Avail)

Free, confidential support from a real person via text, phone, or online chat.
https://findahelpline.com/

Topics: Abuse & Domestic Violence, Anxiety, Bullying, Dementia & Alzheimers, Depression, Eating & Body Image, Family, Gambling, Gender & Sexual Identity, Grief & Loss, Loneliness, Parenting, Physical Illness, Pregnancy & Abortion, Relationships, School & Work, Self-Harm, Sexual Abuse, Stress, Substance Abuse, Suicidal Thoughts, Supporting Others, Trauma & PTSD

Crisis

Genetic Alliance UK, Rare Disease UK, & SWAN

Provides similar services as GARD only this alliance of three organization will know more about the resources and medical specialists available in the United Kingdom. SWAN is focused on supporting those who are undiagnosed. You may call 0300 124 0441 or visit their website for assistance.

https://geneticalliance.org.uk/

International

German Alliance for Rare Diseases (Allianz Chronischer Seltener Erkrankungen)

Provides similar services as GARD only they will know more about the resources and medical specialists available in Germany. You may call +49-30-3300708-0 or visit their website for assistance.

https://www.achse-online.de/de/

International

Global Genes

Global Genes is focused on advocating for and providing support to individuals and families affected by rare and genetic diseases. They work to raise awareness, promote collaboration, and facilitate access to resources for the rare disease community, with a commitment to improving the lives of those dealing with these often challenging and underrepresented medical conditions.

Condition-specific Resources

Good Days

Provides help to patients with specific life-altering conditions. Assistance includes help with the cost of medications and travel. Please note the status of the fund for each individual disease may change throughout the year.
https://www.mygooddays.org/

Financial

Growing Stronger

Growing Stronger is dedicated to promoting medical research and creating resources for individuals with achondroplasia, with the aim of offering valuable information to parents and caregivers as they navigate the lifelong medical journey for their loved ones.

https://growingstronger.org/

Condition-specific Resources

HealthWell Foundation

Provides financial assistance for underinsured patients living with chronic and life-altering conditions. They offer help with drug copayments, deductibles, and health insurance premiums for patients with specific diseases. The disease fund status can change over time, so you may need to check back if funds are not currently available.
https://www.healthwellfoundation.org/

Financial

Help 4 HD

Help 4 HD is dedicated to educating the world about Huntington's disease and Juvenile Huntington's disease while providing essential information, resources, and support to underserved communities. Their ultimate vision is a world where compassion and understanding prevail in response to the devastation caused by these diseases, achieved through education and advocacy efforts that prioritize supporting HD families as a whole.

https://www.help4hd.org/

Condition-specific Resources

HelpCureHD

HelpCureHD fulfills a promise to end Huntington's disease one family at a time. They are committed to finding ways to prevent the transmission of HD and improve the quality of life for those currently living with the disease.

https://www.helpcurehd.org/

Condition-specific Resources

Hemophilia Federation of America

The Hemophilia Federation of America (HFA) is a leading nonprofit organization focused on advocating for and providing support to individuals and families affected by bleeding disorders, such as hemophilia. HFA empowers the bleeding disorders community through education, advocacy, and access to resources, while actively working to advance research and enhance the quality of life for those with these conditions.

https://www.hemophiliafed.org/

Condition-specific Resources

Her ALS Story

Founded in April 2021, Her ALS Story is a network dedicated to empowering young female pALS to make their voices heard in the pursuit of improved treatment and a cure for ALS. With over 70 members, they collaborate with renowned organizations like I AM ALS and Project ALS to amplify their impact by strengthening existing efforts while championing their unique initiatives that shed light on the experiences of young women living with ALS.

https://heralsstory.org/

Condition-specific Resources

Hilarity for Charity (HFC)

Hilarity for Charity is a nonprofit organization founded by comedians Seth Rogen and Lauren Miller Rogen. The organization focuses on raising awareness about Alzheimer's disease and providing support for families affected by it, all while using laughter and humor as a tool for positive change. Through various comedy events and initiatives, Hilarity for Charity works to shed light on the challenges of Alzheimer's and promote much-needed research and caregiving resources.

https://www.wearehfc.org/

Condition-specific Resources

Huntington's Disease Society of America (HDSA)

The Huntington’s Disease Society of America (HDSA) is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families.

https://hdsa.org/

Condition-specific Resources

IAMALS

I AM ALS is a leading nonprofit organization at the forefront of the battle against Amyotrophic Lateral Sclerosis (ALS). They champion patient-driven advocacy, accelerate research, and foster innovation, offering hope and support to those affected by ALS.

https://iamals.org/

Condition-specific Resources

IMALIVE

Live, secure, crisis chat
https://www.imalive.org/

Crisis

IgAN Foundation

The IgA Nephropathy Foundation, founded in 2004, is the primary source of information, education, support, and hope for those dealing with IgA Nephropathy and their caregivers. Through dedicated research funding and a commitment to patients, they aim to find a cure while assisting people at every stage of their journey.

https://igan.org/

Condition-specific Resources

In Case I Forget

In Case I Forget, LLC offers personalized training and coaching for caregivers and memory care facilities, providing research-based strategies to enhance care and service for loved ones and residents. Their flexible programs cater to various needs, including staff training, one-on-one coaching, and personalized sessions.

https://www.incaseiforgetconsulting.com/

Condition-specific Resources

Inclusive Therapists

Inclusive Therapists is dedicated to making this process simpler and safer, centering the needs of Black, Indigenous, and People of Color (BIPOC) and LGBTQIA2S+ intersections (QTBIPOC). Our mission prioritizes the voices and expressions of Neurodivergent and Disabled Communities of Color.

https://www.inclusivetherapists.com/get-matched

Mental Health and Therapy

Indian Organization for Rare Diseases

Provides similar services as GARD only they will know more about the resources and medical specialists available in India. You may call +91-9666438880 or visit their website for assistance.

https://www.rarediseases.in/

International

Insight Memory Care Center

Insight Memory Care Center offers quality day programs for individuals at all stages of dementia and provides support for care partners and families. Their comprehensive approach promotes brain health, fosters connections, and enhances the quality of life for those living with cognitive impairment while offering valuable educational resources for the wider community.

https://www.insightmcc.org/

Condition-specific Resources

Italian Federation for Rare Diseases (Federazione Italiana Malattie Rare)

Provides similar services as GARD only they will know more about the resources and medical specialists available in Italy. You may call 06 4404773 or visit their website for assistance.

https://uniamo.org/

International

Jasper House Warriors

Jasper House Warriors was founded to provide mental health services to those living with sickle cell disease. They aim to raise awareness about the sickle cell community and advocate for mental health.

https://www.jasperhousewarriors.org/

Condition-specific Resources

Job Accommodation Network

JAN provides free consulting services for all individuals, regardless of employment status. Services include one-on-one consultation about all aspects of job accommodations, including the accommodation process, accommodation ideas, product vendors, referral to other resources, and ADA compliance assistance.
https://askjan.org/info-by-role.cfm#for-individuals:job-seekers

Disability

Little People of America

LPA is dedicated to improving the quality of life for people with dwarfism throughout their lives while celebrating with great pride Little People’s contribution to social diversity.  LPA strives to bring solutions and global awareness to the prominent issues affecting individuals of short stature and their families.

https://www.lpaonline.org/

Condition-specific Resources

Living Beyond Breast Cancer

Living Beyond Breast Cancer is a non-profit organization dedicated to empowering individuals affected by breast cancer through education, support, and advocacy. They provide valuable resources and a strong community for those navigating the challenges of breast cancer, offering guidance and promoting a brighter, healthier future beyond diagnosis.

https://www.lbbc.org/

Condition-specific Resources

MG Holistic Society

The MG Holistic Society is committed to providing programming and support for the MG community, and raising awareness about MG. Their programming focuses on sharing a variety of holistic lifestyle tools rooted in nutrition, spiritual wellness, and stress reduction. They have support groups for the LGBQTIA+ community and communities of color.

https://mgholisticsociety.org/

Condition-specific Resources

Managing Costs (National Cancer Institute)

Provides information to help patients and families understand and manage the costs that may be associated with cancer treatment and care, including learning where to find organizations and resources that offer financial assistance.

https://www.cancer.gov/about-cancer/managing-care/track-care-cos
ts

Financial

Mary S Daniel

Mary is the founder of Caregivers for Compromise. She played a crucial role in getting Florida Governor Ron DeSantis to appoint her to the state's Task Force on the Safe Re-Opening of Long-Term Care Facilities. As a result of the Task Force's recommendations, Essential Caregivers were permitted to visit their loved ones in facilities in September 2020.

https://marysdaniel.com/

Condition-specific Resources

Meals on Wheels America

Meals on Wheels operates in virtually every community in America through our network of more than 5,000 independently-run local programs. While the diversity of each program's services and operations may vary based on the needs and resources of their communities, they are all committed to supporting their senior neighbors to live healthier and more nourished lives in their own homes.

https://www.mealsonwheelsamerica.org/find-meals

Food and Housing Security

Mercy Medical Angels

Provides financial assistance with ground and air travel for specialized medical evaluation, diagnosis, or treatment.
https://www.mercymedical.org/

Financial

Michael J Fox

The Michael J. Fox Foundation (MJFF) is driven by the singular goal of accelerating the development of innovative Parkinson's disease treatments. Their core values of optimism, urgency, resourcefulness, and accountability drive their mission to benefit the 6 million people worldwide living with Parkinson's disease.

https://www.michaeljfox.org/

Condition-specific Resources

Miracle Flights

Provides free domestic air travel to U.S. facilities for medical treatment, second opinions, and follow-up for patients in need.
https://miracleflights.org/

Financial

Multiple Sclerosis Society of America

The Multiple Sclerosis Society of America is committed to improving the lives of individuals living with multiple sclerosis (MS). They provide comprehensive support, resources, and advocacy to enhance the well-being of those affected by this chronic neurological condition, while also dedicating substantial efforts to advancing research aimed at finding better treatments and ultimately a cure for MS.

https://mymsaa.org/

Condition-specific Resources

Muscular Dystrophy Association (MDA)

MDA's mission centers on providing hope, answers, groundbreaking research, and high-quality care to families dealing with muscular dystrophy and related neuromuscular diseases. They achieve this through innovations in science, care, education, and advocacy, offering comprehensive support and resources for individuals and families facing these conditions.

https://www.mda.org/

Condition-specific Resources

MyThreeSicklers

The MTS Sickle Cell Foundation's mission centers on increasing public awareness of sickle cell disease and providing support to affected families. They achieve this through educational activities, informational resources, and by promoting the importance of funding for organizations dedicated to raising awareness and supporting those affected by Sickle Cell Disease.

https://mythreesicklers.org/

Condition-specific Resources

Myasthenia Gravis Association (MGA)

The Myasthenia Gravis Association (MGA) is dedicated to supporting individuals, families, friends, and communities impacted by myasthenia gravis.​ They strive to build a supportive community for those affected by myasthenia gravis by increasing public awareness, providing educational opportunities, and fostering meaningful connections with one another.

http://www.mgakc.org/

Condition-specific Resources

Myasthenia Gravis Foundation of America (MGFA)

The Myasthenia Gravis Foundation of America (MGFA) is a dedicated nonprofit organization with a mission to create connections, enhance lives, improve care, and ultimately find a cure for Myasthenia Gravis (MG). MGFA's core values include respect, excellence, transparency, collaboration, and a commitment to continuous improvement, guiding their efforts to support individuals with MG and advance research, education, and patient services within the MG community.

https://myasthenia.org/

Condition-specific Resources

Myasthenia Gravis Hope Foundation

It is the mission of the Myasthenia Gravis Hope Foundation to be the voice of MG patients, to focus on bridging the gap between patient needs and clinical interaction, create positive clinical partnerships, to bring advocacy and education to the forefront and to engage in the arts to help foster awareness and challenge the stigmas faced by the growing Myasthenia Gravis community today.

https://mghope.org/

Condition-specific Resources

National Alliance for Caregiving

The National Alliance for Caregiving partners with other caregiving associations and groups to provide additional resources to help family caregivers address and cope with the challenges of caring for a loved one.
https://www.caregiving.org/resources/general-caregiving/

Caregiver

National Alliance on Mental Illness (NAMI)

NAMI HelpLine: 800-950-6264  is available M-F 10 am – 10 pm ET. Text "Helpline" to 62640, or chat. In a crisis, call or text 988.*

Crisis

National Bleeding Disorders Foundation

The National Bleeding Disorders Foundation is dedicated to supporting individuals and families affected by bleeding disorders, including hemophilia. They offers a wide range of resources, educational programs, advocacy, and community engagement to improve the quality of life for those with bleeding disorders while advocating for better treatments and ultimately a cure for these conditions.

https://www.hemophilia.org/

Condition-specific Resources

National Breast Cancer Foundation

The National Breast Cancer Foundation (NBCF) has a mission to save lives by increasing awareness, early detection, and support for individuals affected by breast cancer. NBCF provides vital resources, including breast health education, free mammograms, and support services, making a significant impact in the fight against breast cancer. Through their initiatives and programs, NBCF strives to empower women and men with the knowledge and assistance needed to detect and overcome breast cancer, ultimately working towards a future without this disease.

https://www.nationalbreastcancer.org/

Condition-specific Resources

National Kidney Foundation

The National Kidney Foundation is revolutionizing the fight to save lives by eliminating preventable kidney disease, accelerating innovation for the dignity of the patient experience, and dismantling structural inequities in kidney care, dialysis, and transplantation.

https://www.kidney.org/

Condition-specific Resources

National MS Society

The National Multiple Sclerosis Society is dedicated to improving the lives of individuals affected by multiple sclerosis (MS). They provide comprehensive support, resources, and advocacy, as well as fund vital research to find better treatments and ultimately a cure for this neurological disease, which affects millions of people worldwide.

https://www.nationalmssociety.org/

Condition-specific Resources

National Organization for Rare Diseases (NORD) Caregiver Respite

NORD provides financial assistance to enable caregivers a break to attend a conference, event or simply have an afternoon or evening away from caregiving. Awards are given on a first come, first served basis. There is no fee to apply. Contact a Patient Services Representative at 203.616.4328 or email [email protected].

Caregiver

National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders (NORD) is dedicated to supporting and advocating for individuals with rare diseases and their families. NORD provides valuable resources, education, and a strong voice in the advocacy for research and policies that benefit the rare disease community, with a mission to improve the lives of those facing these often overlooked medical conditions.

https://rarediseases.org/

Condition-specific Resources

National Suicide Prevention Lifeline

24/7, free confidential support. Prevention & crisis resources for you or your loved ones. If you or someone you know is struggling or in crisis, help is available. Call or text 988 or chat 988lifeline.org

Crisis

Needy Meds

Lists programs that help people who cannot afford medications and healthcare costs. NeedyMeds has information about government programs, low-cost or free medical and dental clinics, and prescription assistance. NeedyMeds also has disease-specific financial aid programs.
https://www.needymeds.org/

Financial

NephCure

NephCure, founded in 2000, is a patient-driven organization that has invested over $40 million in kidney disease research. They focus on rare, protein-spilling kidney diseases like nephrotic syndrome, FSGS, and IgAN, connecting patients, healthcare providers, and other stakeholders to advance research, care, and treatment options.

https://nephcure.org/

Condition-specific Resources

New Dawn Dementia Understandings

New Dawn Dementia Understanding is an organization dedicated to raising awareness and providing support for individuals and families affected by dementia. Through education and community engagement, they aim to enhance understanding and promote compassionate care for those living with dementia, ultimately improving their quality of life.

https://www.newdawndementia.com/

Condition-specific Resources

Organization for Rare Diseases India

Provides similar services as GARD only they will know more about the resources and medical specialists available in India. You may call +91 8892-555-000 or visit their website for assistance.

https://ordindia.in/

International

Orphanet International Rare Disease Helplines

Lists rare disease centers in different countries around the world that offer similar services to GARD. These rare disease centers will know the resources in their own countries better than GARD does. Orphanet is a consortium of 40 countries, within Europe and across the globe. Its mission is to gather and improve knowledge on rare diseases so as to improve the diagnosis, care, and treatment of patients with rare diseases.

https://www.orpha.net/consor/cgi-bin/SupportGroup_AboutOrphanet.php?lng=EN

International

PBCers Organization

The PBCers Organization provides education and support for those affected by Primary Biliary Cholangitis (PBC) and to raise funds for PBC research. They aim to ensure that all PBC patients, as well as their family members and friends, receive the support and education they need while also increasing public awareness about PBC and its research and fundraising needs.

https://pbcers.org/

Condition-specific Resources

Parkinson's Foundation

The Parkinson's Foundation is dedicated to improving the lives of individuals living with Parkinson's disease. They focus on research, education, and advocacy to provide support, resources, and hope to those affected by this neurodegenerative disorder, while actively working towards finding better treatments and ultimately a cure.

https://parkinsonfoundation.org/

Condition-specific Resources

Patient & Medical Transport (Air Care Alliance)

Helps patients in need gain access to distant medical care or supportive services by arranging free flights through volunteer pilots.
https://www.aircarealliance.org/patient-and-medical-transport/

Financial

Patient Access Network (PAN) Foundation

Offers nearly 70 disease-specific assistance programs that help patients pay for their out-of-pocket costs, including deductibles, co-pays and coinsurance, health insurance premiums, and transportation expenses to get to treatment. Please note the status of the fund for each individual disease may change throughout the year.
https://www.panfoundation.org/

Financial

Patient Advocate Foundation

Provides case management assistance for the uninsured or underinsured with life-threatening or debilitating illnesses. Services include help with the following: access to care; co-pay assistance; social security disability applications; and insurance appeals. PAF also has a National Financial Resource Directory that allows patients to find resources within a given state.
https://www.patientadvocate.org/connect-with-services/case-management-services-and-medcarelines/

Financial

Patient Airlift Services (PALS)

Offers free air transportation for those receiving medical care for acute and chronic condition. Compassion flights are considered on a case-by-case basis.
https://palservices.org/

Financial

Patient Assistance Program (National Organization for Rare Disorders)

Provides financial assistance for patients with specific rare diseases including help with costs of medications, insurance premiums, co-pays, diagnostic testing, and travel for clinical trials or consultation with disease specialists. In addition, NORD provides links to other financial assistance resources.

https://rarediseases.org/for-patients-and-families/help-access-medications/patient-assistance-programs-
2/

Financial

Rare Diseases Foundation of Iran

Provides similar services as GARD only they will know more about the resources and medical specialists available in Iran. Their services are provided in Farsi and English. You may call +98 (21) 66572937 or visit their website for assistance.

http://radoir.org/

International

Rare Diseases South Africa

Provides similar services as GARD only they will know more about the resources and medical specialists available in South Africa. You may call 072 476 7552 or visit their website for assistance.

https://www.rarediseases.co.za/

International

Rare Disorders NZ

Provides similar services as GARD only they will know more about the resources and medical specialists available in New Zealand. You may call +64 4 385 1119 or visit their website for assistance.

https://raredisorders.org.nz/

International

Rare Voices Australia

Provides similar services as GARD only they will know more about the resources and medical specialists available in Australia. You may call +61 (0) 497 003 104 or visit their website for assistance.

https://rarevoices.org.au/

International

Regroupement québécois des maladies orphelines (Canada)

Provides similar services as GARD only they will know more about the resources and medical specialists available in Canada. Their service is available in French and English. You may call 1-888-822-2854 or visit their website for assistance.

https://rqmo.org/

International

Sharsheret

Sharsheret, a national non-profit organization, improves the lives of Jewish women and families living with or at increased genetic risk for breast or ovarian cancer through personalized support and saves lives through educational outreach. While their expertise is in young women and Jewish families as related to breast cancer and ovarian cancer, Sharsheret programs serve all women and men.

https://sharsheret.org/

Condition-specific Resources

Sickle Cell 101

Sickle Cell 101 (SC101) is a Silicon Valley-based nonprofit known for its trusted global platforms that offer comprehensive sickle cell education for patients, caregivers, healthcare providers, and stakeholders. Their dedication to providing evidence-based, patient-friendly content makes them a reliable source for information on sickle cell disease (SCD) and sickle cell trait (SCT).

https://www.sc101.org/

Condition-specific Resources

Sickle Cell Alliance Foundation

Sickle Cell Alliance Foundation is a nonprofit organization dedicated to supporting families and patients living with sickle cell disease. Their mission involves advocating, partnering, and raising awareness to improve care for individuals affected by the disease, with a goal to change the narrative about sickle cell and emphasize its relevance to a broader population.

https://www.scafcincy.com/

Condition-specific Resources

Social Security Disability Benefits

To qualify for SSDI benefits, you must:
1. Have worked in jobs covered by Social Security
2. Have a medical condition that meets Social Securities strict definition of disability (https://bit.ly/3N1uVY8)

https://www.ssa.gov/benefits/disability/qualify.html

Disability

Social Security Income Program

The Supplemental Security Income (SSI) program provides monthly payments to adults and children with a disability or blindness who have income and resources below specific financial limits. SSI payments are also made to people age 65 and older without disabilities who meet the financial qualifications.
https://www.ssa.gov/benefits/ssi/

Disability

Special Supplemental Nutrition Program for Women, Infants, and Children (WIC)

The Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) provides federal grants to states for supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women, and to infants and children up to age 5 who are found to be at nutritional risk.

https://www.fns.usda.gov/wic/applicant-recipient

Food and Housing Security

Supplemental Nutrition Assistance Program (SNAP)

To get SNAP benefits, you must apply in the state in which you currently live and you must meet certain requirements, including resource and income limits.

To learn more, visit https://www.fns.usda.gov/snap/recipient/eligibility

Food and Housing Security

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