Rhode Island Liver Resources
If you live in Rhode Island, then you've arrived at the right place. We do our best to provide the most relevant, up-to-date content and resources. These resources are listed by type and then by city.
1407 South County Trail
Building 4, Suite 410
East Greenwich, RI 02818
110 Clock Tower Square
Portsmouth, RI 02874
Brown Alpert Medical School
Liver Treatment Center
55 Claverick Street , 4th Floor
Providence, RI 02903
The Children’s Center for Liver Disease
Hasbro Children’s Hospital
593 Eddy Street
Providence, RI 02903
33 Staniford Street
Providence, RI 02905
148 West River Street, Suite 3
Providence, RI 02904
CENTERS FOR DISEASE CONTROL AND PREVENTION
CDC works 24/7 to protect America from health, safety and security threats, both foreign and in the U.S. Whether diseases start at home or abroad, are chronic or acute, curable or preventable, human error or deliberate attack, CDC fights disease and supports communities and citizens to do the same.
UNITED STATES DEPARTMENT OF VETERANS AFFAIRS
The Department of Veterans Affairs (VA) leads the country in hepatitis screening, testing, treatment, research and prevention. This site provides information both for health care providers and for Veterans and the public.
NATIONAL CANCER INSTITUTE
Cancer.gov is the central website for the National Cancer Institute (NCI), the U.S. government’s principal agency for cancer research. NCI is mandated by U.S. law to disseminate information about cancer and cancer research. This website serves as an important means to achieving that mission.
NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY DISEASES
NIDDK research creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the Nation.
NATIONAL INSTITUTES OF HEALTH
The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the nation’s medical research agency — making important discoveries that improve health and save lives.
SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION
The Substance Abuse and Mental Health Services Administration (SAMHSA) is the agency within the U.S. Department of Health and Human Services (HHS) that leads public health efforts to advance the behavioral health of the nation and to improve the lives of individuals living with mental and substance use disorders, and their families.
UNITED STATES DEPARTMENT OF HEALTH AND HUMAN SERVICES
The mission of the U.S. Department of Health and Human Services (HHS) is to enhance the health and well-being of all Americans, by providing for effective health and human services and by fostering sound, sustained advances in the sciences underlying medicine, public health, and social services.
AMERICAN ASSOCIATION FOR THE STUDY OF LIVER DISEASES
AASLD is the leading organization of scientists and health care professionals committed to preventing and curing liver disease. We foster research that leads to improved treatment options for millions of liver disease patients. We advance the science and practice of hepatology through educational conferences, training programs, professional publications, and partnerships with government agencies and sister societies.
AMERICAN GASTROENTEROLOGICAL ASSOCIATION
The American Gastroenterological Association (AGA) is the trusted voice of the GI community. Founded in 1897, AGA has grown to include more than 16,000 members from around the globe who are involved in all aspects of the science, practice and advancement of gastroenterology.
AMERICAN SOCIETY OF ANESTHESIOLOGISTS
Founded in 1905, ASA is an educational, research, and scientific society with more than 54,000 members, organized to raise and maintain the standards of the medical practice of anesthesiology. ASA is committed to ensuring that physician anesthesiologists evaluate and supervise the medical care of patients before, during and after surgery to provide the highest-quality and safest care, which every patient deserves.
AMERICAN SOCIETY OF TRANSPLANTATION
Founded in 1982, the American Society of Transplantation (AST) is an organization of more than 4,000 professionals dedicated to advancing the field of transplantation and improving patient care by promoting research, education, advocacy, and organ donation. The society is the largest transplant organization in North America and is recognized as the premier society for transplantation. AST members are sought out as transplant experts and advocates. Other transplant organizations, policy makers, regulatory agencies, payors, academic institutions, and the general public look to the AST for guidance, research, and resources related to transplantation.
NORTH AMERICAN SOCIETY FOR PEDIATRIC GASTROENTEROLOGY, HEPATOLOGY & NUTRITION
The mission of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition is to be a world leader in research, education, clinical practice and advocacy for Pediatric Gastroenterology, Hepatology and Nutrition in health and disease.
UNITED NETWORK FOR ORGAN SHARING
United Network for Organ Sharing (UNOS) is the mission-driven non-profit serving as the nation’s transplant system under contract with the federal government. We lead the network of transplant hospitals, organ procurement organizations, and thousands of volunteers who are dedicated to honoring the gifts of life entrusted to us and to making lifesaving transplants possible for patients in need. Working together, we leverage data and advances in science and technology to continuously strengthen the system, increase the number of organs recovered and the number of transplants performed, and ensure patients across the nation have equitable access to transplant.
TRANSPLANT RECIPIENTS INTERNATIONAL ORGANIZATION
TRIO is an independent, not-for-profit, international organization committed to improving the quality of life of transplant candidates, recipients, their families and the families of organ and tissue donors.
WILSON DISEASE ASSOCIATION
A group of individuals in Binghamton, New York formed the Wilson Disease Association (WDA) in 1978. They were trying to help a family with two young boys who had been just diagnosed with Wilson disease. The family had no health insurance and did not qualify for Medicaid because they owned a business. They were having difficulty paying for medical care and medication, so the community started a collection for them in a Lend-a-Hand fund.
DIGESTIVE DISEASES NATIONAL COALITION
Digestive diseases affect millions of Americans. The Digestive Disease National Coalition (DDNC) is your advocacy organization in our nation’s capital. In conjunction with our member organizations, DDNC seeks to raise awareness of these diseases in Congress and in the media.
IMMUNIZATION ACTION COALITION
The Immunization Action Coalition (IAC) works to increase immunization rates and prevent disease by creating and distributing educational materials for healthcare professionals and the public that enhance the delivery of safe and effective immunization services. The Coalition also facilitates communication about the safety, efficacy, and use of vaccines within the broad immunization community of patients, parents, healthcare organizations, and government health agencies.
In partnership with the Acetaminophen Awareness Coalition (AAC), the Know Your Dose campaign educates consumers on how to safely use medicines that contain acetaminophen. By reaching consumers when medicine safety is top of mind, the campaign seeks to raise awareness and promotes four steps for safe acetaminophen use:
- Always read and follow the medicine label
- Know if your medicines contain acetaminophen
- Take only one medicine at a time that contains acetaminophen
- Ask your healthcare professional or pharmacist if you have questions
Blue Faery’s mission is to prevent, treat, and cure primary liver cancer through research, education, and advocacy.
MatchingDonors is an award winning nonprofit organization, and the nation’s largest living organ donor non-profit organization finding and registering living organ donors for people needing organ transplants in the United States.
The CLF Resource Hub was created with community in mind – for people like you and families like yours who are or may be affected by liver disease. Our goal with this Hub is to help provide information, resources, and a sense of community. Whether you’re navigating a liver disease diagnosis, increasing your knowledge of liver health to support a loved one, or seeking lifestyle tips for a happier liver, our Resource Hub is for you!
- How do I manage my worry about cancer?
- How can I still have joy when everything seems to be falling apart?
- What is treatment like for other people?
- Is what I’m feeling normal?
- How do I talk to loved ones about the illness?
- How do I cope with limitations?
We invite you to bring us your questions and talk to people who share similar experiences. Come, and be encouraged!
Open to anyone touched by cancer: patients caregivers, and family members.
This group meets online every Thursday from 12-1 p.m. Registration is not required. Please call (208) 463-6009 for more information.
- Veterans’ Mental Health Issues looks at depression among veterans, PTSD in military veterans, anxiety after military service, co-occurring disorders and substance abuse treatment and mental health assistance for veterans.
- Alcohol Abuse Among Veterans discusses the culture of alcohol abuse within the military, the connection between PTSD & alcohol abuse, provides statistics and a list of FAQs regarding alcohol abuse in military personnel and veterans.
- Veteran Mental Health and Addiction Treatment provides information on how substance use impacts veterans, how this affects veterans’ loved ones, specialized veteran treatment programs and how to find these specific programs.
- American Addiction Center Virtual Support provides free virtual support and online addiction meetings for veterans to use in recovery.
Hepatitis C Basics:
A free overview of Hepatitis C Basics and HCMSG’s Circle Model. This resource is intended for patients, peers, and may also be helpful to community and healthcare providers.
In this article, a spotlight is on two organizations committed to serving the hepatitis C community: National Viral Hepatitis Roundtable and Community Liver Alliance.
Understanding, treating, or living with Hep C? AbbVie povides excellent information and resources for patients on their Hep C website
Educational website dedicated to providing information and resources to healthcare providers who want to learn more about hepatitis C.
ALAGILLE SYNDROME ALLIANCE
The Alagille Syndrome Alliance is an international nonprofit started in 1993, representing the ALGS community and based in the US. This organization is comprised of 1 staff members and 5 board members, working remotely. The Board of Directors of the Alagille Syndrome Alliance locations span internationally allowing for more global outreach, a top priority for the ALGSA. Together, we continue the work of the organization with the sole purpose of making living a life with Alagille Syndrome easier. The Alagille Syndrome Alliance staff and board includes ALGS patients and family members, all deeply understanding of the complex and difficult nature of ALGS and circumstances resulting from such difficulty.
Alcoholics Anonymous is an international fellowship of men and women who have had a drinking problem. It is nonprofessional, self-supporting, multiracial, apolitical, and available almost everywhere. There are no age or education requirements. Membership is open to anyone who wants to do something about his or her drinking problem.
The Alpha-1 Foundation is a not-for-profit Florida corporation founded in 1995 by John Walsh, Sandy Lindsey and Susan Stanley, three people diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). A majority of the Board of Directors is either diagnosed with Alpha-1 or has a family member diagnosed with Alpha-1. The three founders have since passed away, Susan Stanley in 2000, Sandy Lindsey in 2002, and Walsh on March 7, 2017.
AlphaNet, Inc. is a not-for-profit 501(c)(3) organization founded in 1995 with a mission to provide innovative health management and customized care to individuals with Alpha-1 Antitrypsin Deficiency, while funding research for a cure.
AMERICAN HEMOCHROMATOSIS SOCIETY
A medical blog hosted by a medical writer with close ties to the disease.
AMERICAN PORPHYRIA FOUNDATION
The American Porphyria Foundation has supported the Porphyria community since 1983. Our mission is to improve the health and well-being of all individuals and families impacted by Porphyria. We have maintained a relentless focus on education, advocacy, support services and research for the prevention, treatment and cure of the Porphyrias.
CANADIAN LIVER FOUNDATION
In 1969, the Canadian Liver Foundation was born out of the passion and concern of a committed group of business leaders and doctors who believed that liver disease needed a champion. With the help of volunteers, patients and families, researchers, doctors, donors, and corporate supporters who share our vision of a world without liver disease, we are bringing liver research to life.
A life-changing illness ushers in much more than the symptoms of a disease. Challenges and potential opportunities are concomitant travelers. New perspectives, values, and inspiration can emerge if they are welcomed and fostered. An unexpected illness and a stroke of inspiration gave rise to the Caring Ambassadors Program.
CHILDHOOD LIVER DISEASE RESEARCH NETWORK
The Childhood Liver Disease Research Network (ChiLDReN) is a collaborative team of doctors, scientists, nurses, research coordinators, medical facilities, patient support organizations and the National Institutes of Health. The ChiLDReN Network has clinical sites and research laboratories in the U.S., Canada, and the United Kingdom. These sites are working together to improve the lives of children and families dealing with rare cholestatic liver diseases.
CHILDREN’S LIVER DISEASE FOUNDATION
Formed in 1980, Children’s Liver Disease Foundation is the only UK charity dedicated to fighting all childhood liver diseases.
CHILDREN’S ORGAN TRANSPLANTATION ASSOCIATION
The Children’s Organ Transplant Association (COTA) is the premier organization providing fundraising assistance to transplant families … for a lifetime. COTA is a 501(c)3 nonprofit organization, so funds raised to help meet transplant expenses are not considered income for families. Since 1986 more than $150 million has been raised across the country for thousands of children and young adults needing a life-saving organ, bone marrow or stem cell transplant. COTA also works with individuals of any age with a single-gene disorders such as Polycystic Kidney Disease, Cystic Fibrosis or Sickle Cell Disease.
FATTY LIVER FOUNDATION
The Fatty Liver Foundation is the only national, non-profit patient advocacy organization dedicated to improving the identification, diagnosis, treatment, and support of Americans with fatty liver, NAFLD or NASH through awareness, screening, education and patient outreach. FLF’s goal is to improve the lives of both asymptomatic and diagnosed patients by raising awareness among the general public and medical communities, promoting non-invasive screening methodologies, educating patients, and championing the development of responsive lifestyle support systems for individuals of the growing epidemic of fatty liver disease. FLF was founded in 2017 by NASH patient Wayne Eskridge and his wife and caregiver Rosemary Wickowski.
- American Organ Transplant Association: (281) 261-2862
- Medicare Hotline: 1-800-633-4227; 1-800-MEDICARE
- National Foundation for Transplants Inc.: 1-800-489-3863
GET PALLIATIVE CARE
Getpalliativecare.org is a website providing clear, comprehensive palliative care information for people living with a serious illness. Key features of the site include a Palliative Care Provider Directory, a definition of palliative care, and detailed descriptions of what palliative care does and how to get it. It also provides an interactive quiz to assist you in deciding whether palliative care might be right for you or a loved one. The site is provided by the Center to Advance Palliative Care (CAPC).
Provided by the Iron Disorders Institute – Like many organizations, we began with five people (Chris, Randy, Cheryl, Webb, and David) sitting around a “kitchen table” sharing concerns about too much iron. At the time, most of our discussion centered around hemochromatosis, but as we learned more about iron, other disorders were brought to the table and the organization began to take shape. Dr.JT Ford pictured here was the first to join us as a member of our governing board in 2002. Dr. Ford’s prayer is a treasured piece of history and serves as inspiration for the beginning of our meetings.
HEPATITIS B FOUNDATION
The Hepatitis B Foundation is a national nonprofit organization dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide. Our commitment includes funding focused research, promoting disease awareness, supporting immunization and treatment initiatives, and serving as the primary source of information for patients and their families, the medical and scientific community, and the general public.
ICP Care is a 501(c)(3) nonprofit determined to help pregnant mothers who experience Intrahepatic Cholestasis of Pregnancy and to deliver healthy babies. ICP Care’s mission is to provide patient support and education, raise public awareness, support the advancement of research and improve health care practices. ICP Care helps to connect, support, educate and empower those affected by ICP – Intrahepatic Cholestasis of Pregnancy.
Think of this website as a big, comfy house. As you step inside the door you will find a diverse group of wonderful friends from all around the world. We are gathered here for one reason: Our lives have been touched by biliary atresia or other pediatric liver disease and/or liver transplant. Come on in and stay awhile. Ask and answer questions, share your experiences, and gather information, inspiration and hope.
National Transplant Assistance Fund: 1-800-642-8399
NATIONAL FOUNDATION FOR INFECTIOUS DISEASES
Founded in 1973, the National Foundation for Infectious Diseases (NFID) is a non-profit 501(c)(3) organization dedicated to educating the public and healthcare professionals about the burden, causes, prevention, diagnosis, and treatment of infectious diseases across the lifespan.
NATIONAL KIDNEY FOUNDATION
Fueled by passion and urgency, National Kidney Foundation is a lifeline for all people affected by kidney disease. As pioneers of scientific research and innovation, NKF focuses on the whole patient through the lens of kidney health. Relentless in our work, we enhance lives through action, education and accelerating change.
NATIONAL ORGANIZATION FOR RARE DISORDERS
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
NATIONAL VIRAL HEPATITIS ROUNDTABLE
NVHR is a coalition of patients, health care providers, community-based organizations, and public health partners fighting for an equitable world free of viral hepatitis.
PKIDs (Parents of Kids with Infectious Diseases) started in 1996 when some parents couldn’t find babysitters, playmates, or even many relatives willing to spend time with their children. Fear and ignorance of hepatitis B and C and HIV make people do such things.
The search for parents sharing their situation turned up no formal organization, but they did find lots of other moms and dads searching. Consequently, PKIDs incorporated as a 501(c)(3) national nonprofit in 1997.
As a pediatric organization, we fill a void in the nonprofit world and work with many national groups as the children’s representative. We believe that much can be done when groups work together and we initiate and/or support such undertakings.
The PAN Foundation is an independent, national 501 (c)(3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic and rare diseases with the out-of-pocket costs for their prescribed medications.
Partnering with generous donors, healthcare providers and pharmacies, we provide the underinsured population access to the healthcare treatments they need to best manage their conditions and focus on improving their quality of life.
The PBCers Organizations’ mission is to offer education and support to Primary Biliary Cholangitis patients, family members and friends, and to raise funds to help research the causes and cure for PBC.
PFIC ADVOCACY & RESOURCE NETWORK
PFIC.org was founded in 2002 by a mom who wanted to know all she could know about her daughter’s disease. She envisioned a place that people could visit when they needed information, hope and understanding. Through her dedication and commitment, she has helped connect families with providers, built accessible genetic testing labs and has stayed up to date with the latest research. In September 2018 pfic.org became the PFIC Network, Inc., a 501c3 charitable organization. PFIC Network is run entirely by patients and caregivers with a strong connection to families all over the world. We work together with a team of physicians who specialize in the disease to help identify the needs of the community. Together, PFIC families can become a greater voice in the rare disease community, advocating for more medical research, and creating opportunities to help families connect across the world and receive the support they need. Together, we WILL make a difference.
The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC) while providing education and support for those impacted by this rare disease.
Founded in 2005, PSC Partners Seeking a Cure is a 501(c)(3) nonprofit organization. The various programs give support to patients, caregivers, families, and friends, educate patients and the medical community about PSC, and encourage ground-breaking research in the search for a cure.
Alnylam has led the translation of RNAi (RNA interference) from Nobel Prize-winning discovery into an innovative, entirely new class of medicines. Founded in 2002 by a team of distinguished life sciences leaders, Alnylam’s vision is to harness the potential of RNAi therapeutics to transform the lives of people living with diseases for which there are limited or inadequate treatment options. Our pioneering work has delivered the world’s first and only approved RNAi therapeutics—ONPATTRO® (patisiran) in 2018, GIVLAARI® (givosiran) in 2019, and OXLUMO® (lumasiran) in 2020. We are advancing a deep pipeline of innovative RNAi-based medicines in four therapeutic areas: genetic medicines, cardio-metabolic diseases, infectious diseases, and central nervous system (CNS) and ocular diseases.
Acute Hepatic Porphyria
GUIDE TO MEDICARE ELIGIBILITY, COVERAGE AND PLANS
Medicare is available to U.S citizens or permanent residents aged 65 or older, those under age 65 with a qualified disability receiving SSDI benefits for at least 24 months, and people diagnosed with ALS or ESRD. As a health insurance plan provided by the federal government, it plays an important role in some coverage of medical costs.
Medicare is divided into different plans to help offer more choices in cost and coverage. Learn more about Medicare plans available to you.
MEDICAID: HOW TO QUALIFY AND APPLY FOR MEDICAID
One in five Americans receives free or low-cost health coverage through Medicaid, a joint federal and state program administered by individual states under federal guidelines. Each state has different rules about who qualifies for Medicaid and how to apply.
You can apply for Medicaid anytime and must have documented proof of eligibility, including citizenship, residence, age, income and resources, and medical expenses or disability. Eligibility redeterminations are conducted regularly. If you qualify, you can have both Medicare and Medicaid.
HEALTH INSURANCE WHEN YOU’RE UNEMPLOYED
Without an employer helping foot the bill, getting health insurance can be costly. But there are resources available to help you find the best plan for your coverage needs and budget. Learn what you need to know about getting health insurance if you’re unemployed.
THE WELLNESS LEAGUE
The Fatty Liver Foundation (FLF) provides this search for resources in your area such as medical care, community programs, and lifestyle support. The Wellness League is a service of the FLF.
The Journal of Pediatric Gastroenterology and Nutrition (JPGN) provides a forum for original papers and reviews dealing with pediatric gastroenterology and nutrition, including normal and abnormal functions of the alimentary tract and its associated organs, including the salivary glands, pancreas, gallbladder, and liver. Particular emphasis is on development and its relation to infant and childhood nutrition.
Through funding from the West Virginia Department of Health and Human Resources Bureau for Public Health, Quality Insights is addressing COVID-19 health disparities in rural areas and among racial and ethnic minorities in West Virginia.