Rare Disease Report

NORD News for June - The Voice of the Community

JUNE 19, 2017

Save the Date for the 2017 NORD Rare Diseases and Orphan Products Breakthrough Summit

As major changes to the nation’s healthcare system are debated, the 2017 NORD Summit will provide a unique opportunity to hear from the experts and join the conversation on issues of unprecedented importance. The Summit will take place in Washington DC on October 16-17.

In today’s climate of change, this event will address critically important topics for patient advocates, government and industry to come together to discuss.
Sign up to receive Summit updates.
The Summit will include a poster session and abstracts are being accepted now from all interested parties. The deadline is August 18. Find additional information about Summit posters here.

NORD Promotes Patient Input to Senate on Healthcare Reform

In a “Days of Action” campaign, NORD has been mobilizing patients to express their concerns to their senators on key issues related to healthcare reform, such as Medicaid funding and  discrimination based on pre-existing conditions. The campaign was launched as deliberation began in the U.S. Senate following passage of the American Health Care Act (AHCA) by the U.S. House of Representatives.
“In early May,” NORD announced in launching its campaign, “the House passed the AHA despite the voices of concern from the patient community. The bill included over $800 billion in cuts to Medicaid that, if enacted, could potentially cause your state to delay coverage of orphan drugs, remove access to expensive specialty services, and weaken or end vital waiver programs for in-home care. In addition, the AHCA would remove key pre-existing conditions protections by again allowing insurers in certain states to charge premiums based on your health status.”

Running for Rare Team is Accepting Applications

The Running for Rare Team is accepting applications for the Hartford Full and Half Marathon (October 14) and the TCS New York City Marathon (November 5). Applications are being accepted for both runners and community partners.

Sign Up to Receive Real-Time Policy Alerts From NORD

In this time of rapidly changing developments related to health policy, it’s important for all stakeholders to stay informed. NORD’s policy team works hard every day to represent rare disease patients and their families on key issues at both the state and federal level. You can sign up to receive up-to-the-minute policy updates from NORD, as well as news about how you can add your voice to the conversation. You can also join the Rare Action Network to participate in advocacy within your state.

NORD Publishes New Report on HSAN1E

As part of its ongoing series to promote awareness and education related to rare diseases, NORD has published a report in its Rare Disease Database on Hereditary Sensory Autonomic Neuropathy Type 1E (HSAN1E). The report was developed in collaboration with the HSAN1E Society and Christopher J. Klein MD, professor of neurology, Mayo Clinic.


NORD Welcomes Two New Member Organizations
NORD is pleased to welcome the Illness Challenge Foundation and KIF1A.org as its newest members. To become a member of NORD requires meeting criteria established by the NORD board of directors.
APS Type 1 Foundation to Host International Symposium July 13-15
The APS (Autoimmune Polyglandular Syndrome) Type 1 Foundation will host an international symposium at Stony Brook University on July 13-15. This two-day conference will bring together patients, family members, caregivers, clinicians and researchers from around the world. This event will build upon the success of the first-ever international symposium on APS Type 1 which took place in 2015 in Toronto and was hosted by SickKids Hospital. The program will feature leading experts from NIH, the Karolinska Institute in Sweden, and other major centers.
First LAM Awareness Month is Being Observed
June 2017 has been designated the first-ever Worldwide LAM Awareness Month (WWLAM) by the LAM Foundation and the Worldwide LAM Patient Coalition.
Morgan Leary Vaughn Fund to Host Second Annual Morgan’s FunDay
This event will take place in Mahopac NY on June 23. The Morgan Leary Vaughn Fund is dedicated to promoting awareness and advancing research on behalf of those affected by necrotizing enterocolitis.
Mowat-Wilson Syndrome Foundation to Host International Conference
The Mowat-Wilson Syndrome Foundation will host an international conference in Washington DC on June 29-July 1. It will include lectures, workshops, Q and A, and more for individuals and families affected by this syndrome.
Pulmonary Hypertension Association Hosts “PHA On The Road”
PHA On The Road is a free, day-long education and networking program provided by the Pulmonary Hypertension Association in cities across the U.S. The program includes interactive presentations, educational sessions, and opportunities for patients and caregivers to meet and interact with others affected by PH as well as with local PH experts. This year, #PHAOnTheRoad will be held in St. Paul, MN; Providence, RI; Portland, OR; and Pittsburgh, PA. 

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