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PI Parents: We’re No Different
Parents with a primary immune deficiency (PI) face certain challenges that other parents take in stride. Last week, I was at work when I got the dreaded call... [more]
Popcorn Tuesdays
Last night, my son came in the living room and said, “I love Tuesdays because we get to watch something fun and we always have popcorn,”... [more]
A list of past community events for patients with childhood diseases and their families.
PastNews & Events
2016 New Study Confirms Genetic Link Between Autoimmune Diseases
Important advances over the past few years have increased the medical community’s understanding of what are known as “susceptibility” genes, genetic risk factors that contribute to different autoimmune diseases despite their clinical differences.
One recent study shows how these genetic risk factors affect children. In the study of more than 9,000 juvenile inflammatory arthritis (JIA) patients recorded in the German national paediatric rheumatologic database in 2012 and 2013, 50 (0.5 percent) of these children were also diagnosed with type 1 diabetes, a much higher frequency than in the general population. And, more than half of those patients developed type 1 diabetes before JIA.
It is hoped that findings such as these will lead to new preventive and therapeutic interventions.
2016 ZIKA - NEW Guidelines from the CDC
In an effort to help raise awareness of the spread of Zika virus and its possible consequences, I Give for Kids is sharing the Center for Disease Control’s (CDC) new guidelines for the detection and treatment of the virus.
The new guidelines from the CDC recommend that Zika be tested for in any infant or child who has traveled to or resides in an affected area and is symptomatic. Evaluation should include testing of serum and, if obtained for other reasons, cerebrospinal fluid (CSF) specimens.1
Any suspected cases should be reported to state and local authorities.
Zika is a virus that is that is transmitted primarily through the bite of the Aedes species of mosquito. It was first detected in Brazil in the spring of 2015, and since that time, it has spread to more than 26 countries. Zika is most noted for its link with infection in pregnant women and the increase in the incidence of microcephaly in newborns.
Illness associated with Zika virus is usually mild in children, and treatment involves supportive care. Nonsteroidal anti-inflammatory drugs (NSAIDs) should be avoided until dengue virus is ruled out as the cause of illness because of the potential for hemorrhagic complications of dengue fever. NSAIDs should also be avoided in all children aged 6 months and younger. Aspirin should not be used in children with acute viral illnesses because of its association with Reye’s syndrome. The decision to obtain additional laboratory tests, diagnostic studies and infectious disease consultation should be based on clinical judgment as guided by findings from a complete history and physical examination. Information on long-term outcomes among infants and children with acute Zika virus disease is limited; until more evidence is available to inform recommendations, routine pediatric care is advised for infants and children. Death from infection is rare in all age groups, but there is a link to an increase in neurological syndromes and Zika infection.1
1. Fleming-Dutra, KE, Nelson, JM, Fischer, M, et al. Interim Guidelines for Health Care Providers Caring for Infants and Children with Possible Zika Virus Infection — United States, February 2016 . Accessed at www.cdc.gov/mmwr/volumes/65/wr/mm6507e1.htm.
Registration is now open for the PANDAS/PANS symposium. The conference will feature prominent speakers from around the country, and provide information for clinicians, parents and other caregivers and educators.
While there have been reported cases of the disease such as the outbreak in California in 2014, which was linked to an “unvaccinated child,”1 the International Expert Committee reviewed evidence on measles elimination presented by all countries in the Region between 2015 and August 2016 and decided it met the established criteria for elimination.
Measles is a highly contagious disease that still remains a “top killer of children worldwide.”2 In 2014, measles killed nearly 115,000 people, or approximately 13 people per hour.
The virus has been difficult to eliminate even though a vaccine has been available since 1963. But, because of dedicated financing and strong immunization policies, the Americas have been able to eliminate this and four other preventable diseases such as smallpox, polio, rubella and congenital rubella.
The director of the Pan American Health Organization (PAHO) Carissa Etienne stated this is a “historic day for our region and indeed the world.”1
1 Phippen, JW. The Measles-Free Americas. The Atlantic, Sept. 27, 2016. Accessed at http://www.theatlantic.com/news/archive/2016/09/measel-free-americas/501887/.
2 Sheridan, K. WHO Declares Americas World’s First Measles-Free Region. Yahoo News, Sept. 26, 2016. Accessed at https://www.yahoo.com/news/americas-region-worlds-first-free-measles-150143637.html.
Sep 22-24, 2016 Calling All Teenagers!
I Give for Kids would like to help spread the word about a new group being formed for patients in their teens by the GBS/CIDP Foundation International. The group will give teens with GBS/CIDP an opportunity to connect with one another on an emotionally supportive level through an online forum that will be monitored by the Foundation. It will allow teens to express their concerns, ask questions, trade common frustrations and form bonds with one another.
According to the GBS/CIDP Foundation, “The response so far has been wonderful! From the contacts we have already received, these young people are very proactive and really want to get involved with the organization.” Because of their enthusiasm and willingness to help, for the first time, the foundation is also hosting a special event “Just for Teens” at their upcoming international symposium in San Antonio, Texas, September 22-24, 2016. Led by Diana Castro, MD, assistant professor of pediatric, neurology and neurotherapeutics at Children’s Health — UT Southwestern Medical Center in Dallas, the special session will go over understanding your diagnosis, prognosis and emotional health. If you are interested in being a part of the foundation’s new teen community, email Estelle.Benson@gbs-cidp.org or call (866) 224-3301. For further information on the GBS/CIDP 14th International Symposium, go to www.gbs-cidp.org.
Sep 21, 2016 IDF Creates Webinar Series for Young Adults
Because being a young adult with a chronic illness can be challenging, the Immune Deficiency Foundation (IDF) has developed PI Voices, a series of webinars specifically focusing on the unique needs faced by young adults ages 18 to 30 with primary immune deficiencies (PIs).
The series consists of five live webinars covering topics from career management, medical care prioritization, insurance transitions, family planning and health/social life balance. Each offers participants an opportunity to ask questions of panel experts and connect with other audience members who may share their experiences of living with PI.
Please join IDF for the next webinar Wednesday, Sept. 21, 2016, at 8:00 pm ET. The webinar topic is The teenage years are over, and you are now an adult. You make decisions, and - for the most part - you make the rules. Your choices may be influenced by the fact that you have a PI: but you can make decisions that will help you live a fun, healthy life. Panelists will discuss their experiences and listen and respond to your concerns for your health and social life. To register for this event, go to the Registration Page or call 800-296-4433.
Aug 24, 2016 IDF Creates Webinar Series for Young Adults
Because being a young adult with a chronic illness can be challenging, the Immune Deficiency Foundation (IDF) has developed PI Voices, a series of webinars specifically focusing on the unique needs faced by young adults ages 18 to 30 with primary immune deficiencies (PIs).
The series consists of five live webinars covering topics from career management, medical care prioritization, insurance transitions, family planning and health/social life balance. Each offers participants an opportunity to ask questions of panel experts and connect with other audience members who may share their experience of living with PI.
Please join IDF for the next webinar Wednesday, August 24, 2016, at 8:00pm ET. The webinar topic is Planning and Family PI:
Are you entering a new stage in your life and thinking about having a family of your own? Listen to others who have gone through various stages of family planning, and what tips and advice they can give you before the next chapter in your life. To register for this event, go to the Registration Page or call 800-296-4433.
Apr 20, 2016 IDF Creates Webinar Series for Young Adults
Because being a young adult with a chronic illness can be challenging, the Immune Deficiency Foundation (IDF) has developed PI Voices, a series of webinars specifically focusing on the unique needs faced by young adults ages 18 to 30 with immune deficiencies.
The series consists of five live webinars covering topics from career management, medical care prioritization, insurance transitions, family planning and health/social life balance. Each offers participants an opportunity to ask questions of panel experts and connect with other audience members who may share their experience of living with PI.
Please join IDF for the next webinar April 20, 2016, at 8:00pm ET. The webinar topic is: Fitting Your Medical Care Into a Busy Life. To register for this event, go to the Registration Page or call 800-296-4433.
Feb 29, 2016 Rare Disease Day 2016
Please join I Give for Kids in making the voice of rare diseases heard!
On Feb. 29, people living with or affected by a rare disease, caregivers, patient organizations, politicians, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases.
The Rare Disease Day 2016 theme, “Patient Voice,” recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and careers.
The Rare Disease Day 2016 slogan, “Join us in making the voice of rare diseases heard,” appeals to a wider audience - those who are not living with or directly affected by a rare disease - to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.
Patients and patient advocates use their voice to bring about change that:
Ensures politicians continuously and increasingly acknowledge rare diseases as a public health policy priority at both national and international levels
Increases and improves rare disease research and orphan drug development
Achieves equal access to quality treatment and care at local, national and European levels, as well as earlier and better diagnosis of rare diseases
Supports the development and implementation of national plans and policies for rare diseases in a number of countries
Helps to reduce isolation sometimes felt by people living with a rare disease and their families
Rare Disease Day 2016 amplifies the voice of rare disease patients so that it is heard all over the world.
The patient voice is:
stronger when patients receive training so that patient advocates are equipped with the skills and information they need to be able to represent the patient voice at the local, national and international level, within and on behalf of their patient organizations.
vital because rare disease patients are experts in their disease. In situations when there is often a lack of medical expertise or disease knowledge because a disease is so rare, patients develop expertise on treatment and care options. With this expertise, the voice of a rare disease patient is often more inherent to the decision-making process regarding their treatment or care options.
increasingly present and respected in the medicines regulatory process, during which patients bring real-life perspective to the discussion. This voice needs to be encouraged to become stronger all along the life cycle of the research and development process, from the early stages of development of a medicine, right through to when the medicine is in use in a wider population of patients. This will help to ensure medicines are developed more efficiently and, in turn, will result in patients accessing more, better and cheaper treatments at an earlier stage.
October 9, 2015 PANDAS/PANS Awareness Day
PANDAS Network is dedicated to improving the diagnosis and treatment of children with PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) and PANS (pediatric acute-onset neuropsychiatric syndrome). Armed with an impressive network of doctors, researchers and scientists, PANDAS Network strives to collaborate with subject matter experts, build public awareness, provide family support and gather data and resources to better inform parents and the medical community about PANDAS and PANS.
August 7-8, 2015 Midwest PANS/PANDAS Conference
Registration is now open for the Midwest PANS/PANDAS Conference to be held August 7 and 8 in St. Louis, Missouri.
The Midwest PANS/PANDAS Parent Association is hosting an educational conference August 7 and 8 in St. Louis, Mo., for families and professionals. The conference will feature prominent speakers from around the country, and provide information for clinicians, parents and other caregivers and educators.
To register for the conference, visit the association’s website at: www.midwestpandas.com
Further information on PANS/PANDAS can be found at:
October 21-22, 2014 Autoimmune Neuropathies Facebook Chat
The Neuropathy Association (TNA) is hosting an “Autoimmune Neuropathies” Facebook chat event on October 22 from 7:00 pm to 8:30 pm Eastern Standard Time. Co-sponsored by IG Living, the event offers the neuropathy community an opportunity to learn about and discuss autoimmune neuropathies. facebook.com/NeuropathyAssociation
