The Iron Disorders Institute (IDI) is a nonprofit public health interest organization which provides information about early and accurate diagnosis and appropriate treatment for people with iron disorders. Operating since 1998, the IDI assists patients who are affected by an imbalance of iron in their body, possibly leading to conditions such as hemochromatosis, iron deficiency anemia, acquired iron overload, sickle cell anemia, thalassemia, juvenile hemochromatosis, African siderosis, porphyria cutaena tarda, sideroblastic anemia and anemia of chronic disease.

IDI’s main goal is to “Educate patients on what iron out of balance means and try to arm them with good educational materials to take to their physicians,” said Cheryl Garrison, Executive Director of IDI. “In that way, we support a healthy relationship between the patient and the caregiver.”

For undiagnosed patients, IDI stresses that recognizing symptoms is an essential task for the diagnosis of their condition. For patients who have been diagnosed with an iron-related condition, IDI acts as an information banker by directing patients to other reliable organizations who are experts on their condition.

The IDI helps patients learn more about various iron-related conditions by coordinating an online discussion group, providing a toll-free information request line at (888) 565-4766, and offering educational materials on their websites, www.irondisorders.org and www.hemochromatosis.org.

Last Updated: July 16, 2009

The Arthritis Foundation is a national nonprofit organization providing resources for education, research, and advocacy for people living with arthritis. Founded in 1948, the Arthritis Foundation is the largest private, nonprofit contributor to arthritis research in the world, funding more than $380 million in research. According to Dr. Patience White, the Arthritis Foundation’s chief public health officer, “We are the voice of the 46 million people living with arthritis. We provide access to the education and resources these arthritis patients need to live a healthy life.”

With more than 500,000 volunteers and 41 local chapters nationwide, the Arthritis Foundation offers a large number of programs and services to help people take control of their arthritis. Their website, www.arthritis.org, offers a wealth of information, including a Disease Center for information about symptoms and treatment, as well as a Pain Center that offers information on different pain management techniques. The Arthritis Foundation also publishes a variety of in-depth books and booklets about living and coping with arthritis, as well as the bi-monthly magazine, Arthritis Today.

Arthritis Foundation programs are offered at minimal cost to participants throughout the country in most major cities and in many community-based settings, such as local YMCAs. These programs include their Life Improvement Series, designed specifically for people with arthritis. Taught by nationally certified instructors, this group programs include aquatic, exercise and self-help programs that have been proven to help increase mobility, reduce pain and stiffness, and reduce physician visits. Let's Move Together is a nationwide movement that encourages people to move every day to prevent or treat arthritis. Additionally, the Arthritis Foundation ensures public policy and advocacy efforts are being introduced and passed to support its mission of improving lives of people with arthritis.

“Our vision is to build a world free of arthritis pain”, said Dr. White. “We strive to accomplish this by investing in innovative arthritis research, reaching people with community-based programs and fighting for legislation that improves health care.” For more information about the Arthritis Foundation, visit their website at www.arthritis.org.

Last Modified: April 8, 2008

The American Academy of Pediatrics (AAP) is a non-profit organization of 60,000 pediatricians that provides resources for the health, safety and well-being of infants, children, adolescents and young adults. The organization was founded in 1930 by pediatricians who wanted an independent forum focused on children’s needs. For nearly 80 years, the AAP has supported and promoted the idea that children have special developmental and health needs.

Activities of the AAP include advocacy for children and youth, public and professional education, research, and advocacy for pediatricians. The AAP is a professional organization for doctors, but it also provides many resources for parents. Referring to their website ( www.aap.org), The President of AAP, Dr. David A Tayloe, Jr. stated “Whether you’re looking for general information related to child health or for more specific guidelines concerning a pediatric issue, you’ve come to the right place. Here, you’ll find information regarding the Academy’s many programs and activities…our policies and guidelines…our publications and other child health resources.”

If you need to find a pediatrician in your area, try the AAP's online pediatrician referral service. The organization also provides policy statements for children’s issues, parenting guides, as well as healthcare information for parents. AAP also offers brochures for parents with information about the treatment and prevention of many common childhood diseases and conditions.

The AAP strives to provide parents with, unbiased and comprehensive information from the nation’s leading child health experts. Visit the American Academy of Pediatrics at www.aap.org.

Last Modified: January 14, 2008

The National Women’s Health Resource Center (NWHRC) is a non-profit organization that provides education to women about health and wellness issues. Female obstetrician/gynecologist, Dr. Violet Bowen Hugh started NWHRC in 1988 as part of a dream to provide a center for comprehensive health for all women. For the past two decades, NWHRC has supported and promoted the advancement of women’s health and grown to become a clearinghouse for health and wellness information. In 2007, Good Housekeeping magazine named NWHRC the #1 women’s health site.

“We look at women’s health from an ages and stages approach. No matter where you are in your life, NWHRC has the resources to help you live well,” said Elizabeth Battaglino Cahill, Executive Director of NWHRC. “We are an organization of women, founded by women, for women. We bring women the tools they need to live better, healthier, and stronger.”

The NWHRC provides a range of services designed to assist women in making informed decisions concerning their health. The website covers over 100 health topics, complete with questions to ask your doctor, diagnosis, treatment, and lifestyle tips. For certain topics their panel of health experts will answer questions from patients. A newsletter, the National Women’s Health Report, presents in-depth reviews of various health topics and is published multiple times each year. In addition, past and present educational campaigns have helped educate women about topics like contraception, oral health, menopause, heart disease and osteoporosis.

The NWHRC prides itself in providing what they feel is reliable, unbiased and comprehensive health information for women. The website is updated quarterly. Visit NWHRC online or contact them toll free at (877) 986-9472.

Last Modified: October 9, 2008

Dialysis Patient Citizens (DPC) is a non-profit organization serving more than 20,000 dialysis patients and their families. “Over the past four years, acting as the voice of dialysis patients of all modalities and backgrounds across the United States, we have grown to become the largest patient-led organization advocating on behalf of improved dialysis care nationwide,” said Chad Lennox, Executive Director of Dialysis Patient Citizens. “When a person is first diagnosed with chronic kidney disease (CKD) they are usually angry and upset. Then they start to learn about their disease. This knowledge allows patients to become empowered to take an active role in their own care; to become an advocate for themselves and others.”

Since its inception, DPC members have led a number of initiatives to improve dialysis care, including enrolling more than 360 DPC Patient Ambassadors. These Ambassadors advocate on behalf of dialysis patients by building partnerships with caregivers and legislators, and educating patients about issues that may affect their care.

Since anemia is a very common complication in dialysis patients, DPC's education and advocacy efforts have often focused on the management of anemia. Their Patient Ambassadors stay up-to-date on anemia and help educate other dialysis patients. DPC has online anemia resources, including an educational brochure titled, “The Power of Iron”, which discusses the role of iron in treating anemia. They are also working on an online “educational classroom” about anemia.   

Patients and their families can sign up for a free membership with DPC. Members receive quarterly newsletters by mail, opportunities to participate on conference calls and patient surveys, and a chance to interact with thousands of people sharing similar experiences. Visit DPC online to become a member or learn more about their programs, advocacy campaigns, and efforts to empower dialysis patients.

Last Modified: July 17, 2008

Recently, NAAC chatted with Lori Hartwell, founder of the Renal Support Network (RSN). RSN is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease. RSN strives to help patients develop their personal coping skills, special talents, and employability by educating and empowering them (and their family members) to take control of the course and management of the disease. A vital role of RSN is to provide lawmakers and policymakers with the patients’ perspective on the needs and capabilities of people with kidney disease.

Chronic kidney disease is no laughing matter, but for Lori Hartwell, there’s no better medicine than a smiling friend. Battling chronic kidney disease since age two, Hartwell has found hope to be her best ally and told NAAC recently that, “you are your number one advocate.” For patients diagnosed with chronic kidney disease, learning how to fight can be an exhausting endeavor. Yet Hartwell said, “hope and humor are like aids that help you digest all that educational material.”

Building the Renal Support Network
In the early 1990’s Hartwell said she saw many kidney patients who were depressed. She sensed a great deal of loneliness because they were not given a chance to communicate with their peers. Her solution was to create the Renal Support Directory, a listing of kidney disease patients in southern California complete with contact information so they could share their experience, strength and hope with one another. By 2007, the directory was replaced with the HOPEline, a toll-free phone number for CKD patients and their families to talk with fellow patients for peer support.

RSN began with the directory but it didn’t stop there. Hartwell felt too few activities allowed patients to get involved. At that time, the renal community focused more on the professional development of healthcare professionals, but did not always create meaningful volunteer activities for patients. Today, RSN has many ways for kidney patients to become involved either learning or communicating online, attending patient meetings, volunteering for events, or even visiting government officials to advocate for kidney disease issues.

RSN Programs for All Walks of Life

• Online, RSN provides articles at Kidney Times and radio pod casts at Kidney Talk, both addressing important kidney disease issues.
• RSN helps educate patients and healthcare professionals. The Patients Educating Patients and Professionals (PEPP) program brings patient speakers with kidney disease to local communities to share their knowledge about living with and treating the disease.
• RSN holds free Regional Patient Lifestyle Meetings across the United States for CKD patients and family members. The meetings are intended to let patients know the disease can be overcome with hope, proper planning, knowledge of the disease, and a touch of common sense.
• In lavish fashion, RSN annually hosts a Renal Teen Prom, for high school students with kidney disease. It provides an opportunity to for teens to interact with their peers and take part in an event that no young person should miss. Although one night of dancing and socializing many not make up for the lost experiences kidney disease patients may endure, it can show them a fulfilling and successful life is possible despite their illness.
• RSN also evaluates advocacy issues on a national level and takes on the ones where they can make a difference. Projects engage patients and promote their involvement in the community. See RSN advocacy issues.

Where Can I Learn More About Kidney Disease And Anemia?
Many patients learn about anemia and kidney disease from their doctors or by reading information on their own. NAAC’s Anemia & Kidney Disease information handout is a good place to start for information about anemia. For patients who have been ‘Just Diagnosed’ with kidney disease, KidneyTimes includes articles discussing dialysis, communicating with your doctor, health tips, progression of kidney disease, transplants and much more.

Last Modified: November 8, 2007