New Report Shows States Fall Short on Policies to Help Reduce Burden of Rare Diseases Affecting 1 in 10 Americans

A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released today by the National Organization for Rare Disorders Rare Action Network™ (NORD RAN). The 2018 “State Report Card” indicates that progress in several areas of health policy is slow. “The numbers are astonishing,” said Peter L. Saltonstall, president and CEO of NORD. “The latest State Report Card […]

The Kaufman Music Center’s Summer Musical Theater Workshop

At Kaufman Music Center’s five-week Summer Musical Theater Workshop, kids participate in all aspects of producing a show, which culminates in a full-scale production in Merkin Concert Hall. Professional theater directors, writers and composers work with groups of kids age 5-15 on seven brand new, original musicals inspired by a theme. The children, who represent a diverse and enthusiastic group of NYC’s youngest theater fans, will star in the musicals in three performances at Kaufman […]

The Sacrifices Rare Disease Caregivers Make: National Alliance for Caregiving

First-of-its-Kind Study Looks at the Impact of Rare Disease on Family Caregivers Caregivers and Families Face Life-Altering Challenges: Support Services Rarely Used (Washington, D.C. Feb. 28) Findings from a first-of-its-kind national snapshot of caregivers of individuals with a rare disease or condition paint a picture of friends and families facing emotional, financial, physical, and social strain with little support from outside resources. The National Alliance for Caregiving, in partnership with Global Genes, released findings of an online study […]

PBS KIDS Announces Adaptive Apparel Collection Available Exclusively At ZAPPOS

Zappos and PBS KIDS unveil a sensory-friendly, adaptive clothing line; programming; digital resources; and more during Autism Awareness Month  Arlington, Va., April 11, 2018 – Today, PBS KIDS and Zappos Adaptive are introducing a line of gender-neutral two-way reversible adaptive apparel with kid-friendly designs that promote independence for all children. Manufactured by 4WARD Clothing, the PBS KIDS Adaptive Apparel Collection will soon be available exclusively at Zappos.com. The PBS KIDS Adaptive Apparel Collection includes t-shirts and lounge pants designed […]

Calling All Innovators For The “CAREGIVERS SHARK TANK”

The National Caregivers Conference is inviting innovators, inventors, researchers and thought leaders to share their new ideas, products, technology’s, or therapeutic concepts that aim to transform the health and role of family caregivers. The National Caregivers Conference is returning to New Jersey since Superstorm Sandy forced its cancellation in October 2012. This annual conference is renowned for its National level speakers, workshops and exhibitors who address both individual and national issues facing the caregiver community. […]

Orange Grove research center aims to educate about dementia, disabilities

As seen in by Elizabeth Fite Patti Wade remembers John Goodlet as her loving, independent friend who idolized Elvis Presley. “We called him ‘John Elvis,’ ’cause he always liked to dress up like Elvis and play Elvis music,” she said. Goodlet had Down syndrome, a genetic disorder caused when a person is born with extra genetic material from chromosome 21. Today, he’s remembered as the inspiration for the Orange Grove Center on Aging, Dementia and […]

Sesame Place® Becomes the First Theme Park in the World to be Designated as a Certified Autism Center

SESAME PLACE®  BECOMES the FIRST THEME PARK IN THE WORLD TO BE designated as a Certified Autism Center   Certification readied for April’s Autism Awareness month and start of new season Langhorne, PA (April 2, 2018) – Sesame Place®, the nation’s only theme park based entirely on the award-winning show Sesame Street®, in conjunction with the International Board of Credentialing and Continuing Education Standards (IBCCES), today announced the completion of a staff-wide autism sensitivity and […]

ANCOR Names Leroy Bryant 2018 Direct Support Professional of the Year

ANCOR Names Leroy Bryant 2018 Direct Support Professional of the Year New Mexico DSP is honored for work in support of community living for people with disabilities Alexandria, VA — The American Network of Community Options and Resources (ANCOR) announced today that Leroy Bryant of Gallop, New Mexico, is the recipient of the 2018 National Direct Support Professional Recognition Award, which is underwritten by Relias Learning. ANCOR will present the award to Bryant at a ceremony honoring […]

Raising Awareness of the Benefits of Music in Therapy

Leading regional musical organizations collaborated in a distinctive chamber music event on February 2, 2018, to help raise awareness of the benefits of music in therapy. The Chattanooga-based nonprofit organization, Music Therapy Gateway in Communications (MTGIC), initiated the innovative series of educational concerts and informational lectures in 2013, which has now become a yearly event. Grant funding from the Tennessee Arts Commission has supported each concert, enabling admission to be free of charge. Erlanger Health […]

Disability Stigma and Your Patients

For people with disabilities, stigma can be a major barrier to participation. Stigmatizing attitudes about disabilities can also affect relationships between patients and providers. However, health care providers can be allies with their patients and help reduce the impact of stigma. What Is Disability Stigma? The word stigma comes from the Greek word for “mark.” Generally, stigma is a negative set of beliefs about people with specific characteristics. For example, ethnic or sexual minorities, or people […]