Get Involved Archives - NORD (National Organization for Rare Disorders)

June 29, 2017

Rare Disease Advisory Council Bill Moves through Pennsylvania House

Posted at June 6, 2017 03:50 pm by Christina Jensen

Update: June 29, 2017–Today, H 239, a bill that would establish a Rare Disease Adviosry Council and provide Pennsylvania’s 1.2 million rare disease patients with a voice in the state government, passed in the Senate. Director of State Policy at the National Organization for Rare Disorders (NORD), Tim Boyd, said, “With the passage of HB 239, rare disease patients… Read More

Tags: HB239, House of Representatives, Pennsylvania, Pennsylvania Rare Disease Advisory Council, Rare Action Network, Rare Disease Advisory Council, Tim Boyd

June 27, 2017

TOPIC: Advocacy, Featured News, Get Involved

NORD Issues Statement in Response to Delay in Consideration of the Senate Better Care Reconciliation Act

Posted at June 6, 2017 05:25 pm by Christina Jensen

Washington, D.C., June 27, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the delay in consideration of the Senate Better Care Reconciliation Act:

“Today, Senate Leadership announced they will not hold a vote this week on the Better Care Reconciliation Act… Read More

Tags: #ProtectPatientsNow, ACA, Affordable Care Act, AHCA, American Healthcare Act, BCRA, Better Care Reconciliation Act, Health Coverage Reform, Healthcare Bill, Obamacare, Rare Action, Rare Disease Advocacy, Senate Healthcare Bill, United States Senate

June 20, 2017

TOPIC: Advocacy, Get Involved, Sticky Posts for Homepage

Protecting Your Healthcare Coverage

Posted at June 6, 2017 12:52 pm by Christina Jensen

The new administration and Congress are re-examining the United States health insurance system with the goal of repealing the Affordable Care Act, and replacing it with a new system.

Before the Affordable Care Act was enacted in 2010, rare disease patients faced discriminatory insurance practices due to their pre-existing condition. Patients were denied coverage to vital therapies and specialists, and… Read More

Tags: ACA, Affordable Care Act, Rare Disease Day, Rare Diseases

June 20, 2017

TOPIC: Advocacy, Events, Featured News, Get Involved, Sticky Posts for Advocate

NORD Leads Rare Disease Community Days of Action Campaign to Protect Healthcare Coverage

Posted at June 6, 2017 12:09 pm by Christina Jensen

Washington, D.C., June 20, 2017 – The National Organization for Rare Disorders (NORD), an independent nonprofit organization representing the 30 million Americans with rare diseases, has launched a nationwide campaign to urge the U.S. Senate to protect lifesaving health care for the millions of children and adults with rare diseases by opposing any legislation that would harm rare disease patients,… Read More

February 28, 2017

TOPIC: Featured News, Get Involved, Patient Stories, Press Releases

NORD Unveils “Do Your Share for Rare,” Year-long Campaign for Rare Disease Public Awareness

Posted at February 2, 2017 09:25 am by Jennifer Huron

Danbury, Conn., February 28, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announced a year-long awareness campaign for rare disease.

Kicking off today—Rare Disease Day 2017—“Do Your Share for Rare” features the voices and stories… Read More

Tags: patient stories, Peter L. Saltonstall, Public Service Announcement, Rare Disease Day

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June 29, 2017

Rare Disease Advisory Council Bill Moves through Pennsylvania House

Posted at June 6, 2017 03:50 pm by Christina Jensen

June 27, 2017

NORD Issues Statement in Response to Delay in Consideration of the Senate Better Care Reconciliation Act

Posted at June 6, 2017 05:25 pm by Christina Jensen

June 20, 2017

Protecting Your Healthcare Coverage

Posted at June 6, 2017 12:52 pm by Christina Jensen

June 20, 2017

NORD Leads Rare Disease Community Days of Action Campaign to Protect Healthcare Coverage

Posted at June 6, 2017 12:09 pm by Christina Jensen

February 28, 2017

NORD Unveils “Do Your Share for Rare,” Year-long Campaign for Rare Disease Public Awareness

Posted at February 2, 2017 09:25 am by Jennifer Huron

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Alone we are rare. Together we are strong.®