The UnitedHealthcare Children's Foundation is a 501(c)(3) non-profit charity dedicated to facilitating access to medical-related services that have the potential to significantly enhance either the clinical condition or the quality of life of the child and that are not fully covered by the available commercial health benefit plan. This “support” is in the form of a medical grant to be used for medical services not covered or not completely covered by commercial health benefit plans.

An online network for sufferers of inflammatory bowel disease suggests a new way of treating chronic disease, letting patients collaborate with doctors in collecting data and suggesting ideas for treating their condition.

It's not always easy to get access to your medical records - important info for rare disease patients.

RARE, a new feature documentary, follows an inspiring and extraordinary mother in a race against time as she unites a group of isolated people from around the world in a quest to cure her daughter’s rare genetic disease.

The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.

A family page for Jack Frost, a teenager with M-CM.
This site has a new Facebook page: https://www.facebook.com/jackthestorysofar

27 "Friends of Frances" ran a half marathon on Sunday to raise awareness for M-CM and other rare diseases.

This page shows GoodSearch and GoodShop earnings for the M-CM Network, could be used to encourage people to use these -- installing the GoodToolbar makes it easy.

A touching account of a photographer considering how we see children with genetic differences.

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. This year it is on February 29th. Here is a list of US events by state.

ReelAbilities Film Festival is dedicated to promoting awareness and appreciation of the lives, stories and artistic expressions of people with different disabilities.

Caroline's Cart is a shopping cart that allows non-ambulatory children that have outgrown a typical shopping cart to participate in grocery shopping with their families.

Genomics research increasingly depends on access to large pools of individuals’ genetic and health data, but there is mounting dissatisfaction with governance approaches that erect barriers between donors and the biomedical research in which they are participating. Typically, participants have little or no opportunity to track how their data are being used, what discoveries result, and what the new knowledge might mean for them, even when findings are of life and death significance for the participant.

30 pieces of hospital wisdom

The 411 on Disability Disclosure: A Workbook for Youth with Disabilities is designed for youth and adults working with them to learn about disability disclosure. This workbook helps young people make informed decisions about whether or not to disclose their disability and understand how that decision may impact their education, employment, and social lives. Based on the premise that disclosure is a very personal decision, the Workbook helps young people think about and practice disclosing their disability.

This link came via Genetic Alliance, their email says: "Knowing what records to keep can be a daunting task, especially for a child with special health care needs. The Special Needs Alliance provides a detailed list of documents that may be useful during a child’s lifetime. This includes IEPS, MFEs, 504 plans, results of medical exams by specialists, letters from employers, and court documents regarding guardianship/conservatorship to name a few."