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
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.

ALPHA-1 FOUNDATION
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.

ALPHA NET
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.

CARING AMBASSADORS
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.

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).

HEMOCHROMATOSIS.ORG
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
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.

LIVER FAMILIES
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 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.

PARENTS OF KIDS WITH INFECTIOUS DISEASES

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.

PAN FOUNDATION
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.

PBC’ERS ORGANIZATION
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.

PSC PARTNERS SEEKING A CURE

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.

Rx Advocates

ALNYLAM PHARMACEUTICALS
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

PINPOINT AHP

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.

https://www.affordablehealthinsurance.com/medicare/

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.

https://www.affordablehealthinsurance.com/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.

https://www.affordablehealthinsurance.com/health-insurance-for-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. 

https://www.thewellnessleague.org/findhelp/?ref=cla

Journal of Pediatric Gastroenterology and Nutrition

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.

Last-Minute Lowdown: The Latest From the CDC, NHSN, CMS, and Quality Insights

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.

Ronald McDonald House Charities | RMHC