A few members of the community have brought a social media conversation to our attention that inaccurately describes NORD’s involvement in state-based Rare Disease Advisory Councils. Because the issues of state advocacy and collaboration are so important, we would like to set the facts straight.
Rare Diseases United Foundation (RDUF) did approach NORD to support legislation to be introduced in several states establishing these councils, similar to the legislation referenced in Connecticut. We reviewed the legislation with the support of our members, at which time it was determined that without certain revisions we could not in good faith promote the legislation.
After receiving phone calls and emails from our members on this issue, we contacted RDUF in February expressing interest to support this effort and to communicate our concerns over a few of the common provisions that appeared in all of the state bills. The changes we proposed would prioritize increased patient and organizational membership on the councils, and coordination with other state and federal efforts. Those changes were declined by RDUF.
NORD was then approached by a representative at our Connecticut State House Event for support and input on H.R. 6580, which the representative had drafted and modeled after the Massachusetts and Rhode Island state bills without our consultation. We, along with several advocates, reviewed the bill and met with the representative to propose changes, which included:
1. Remove NORD from the Council and to instead include up to 3 representatives from patient-based organizations operating within the state
2. Improve representation on the Council:
a) Increase physician participation to 10 representatives, and include the following specialties: gastroenterologist, psychologist, pediatrics, metabolic specialists, and genetics
b) Increase both rare disease survivor and caregiver participation to 2 representatives, one of which would include a pediatric caregiver
c) Include a representative from the State Newborn Screening Program
d) Include a representative from the State Department of Education
The proposed changes did not include a request for government funding, but rather stated that the Advisory Council should be allowed “to apply for and accept any grant of money from the federal government, private foundations, or other sources which may be available for its operation and State programs related to rare diseases.”
We do not support naming any specific organization(s) in these bills because we believe that is inappropriate for any legislation intended to benefit the entire rare disease community. The Council should be as inclusive as possible. As well, representation is best suited for those living in and managing the day-to-day care of rare disease patients in the given state.
We are happy to share our proposed changes with any interested advocates. Additionally, since the bill is still in committee, the representative’s office has indicated that the public still has the opportunity to submit other changes that would improve the legislation. (Please Note: the current version of the bill available online does not reflect changes proposed by NORD and other rare disease advocates. The changes are currently being reviewed by the Public Health Committee and Connecticut Department of Health.)
Our team is made up of dedicated and compassionate patients, parents and advocates. We are in the fight against rare diseases alongside you fighting for all 30 million Americans – including the ones we love and have lost.
The final 2015 State House Event took place yesterday. Now that all of the numbers are in, take a look at (and share!) this year’s highlight reel & recap:Together, we planned and hosted 32 State House Events in capitol buildings across the U.S., up from last year’s 12 State House Events
With all of our efforts, Rare Disease Day continues to grow! Thank you to everyone who planned and attended events, joined the social media campaign, changed their profile photos, shared infographics, and got involved. As the official U.S. sponsor of Rare Disease Day, NORD thanks everyone who came together to support this truly community and group effort. Together, we are strong!
Keep the Momentum Going read more >
As part of Operation Wear Red (March 1-7, 2015) to raise awareness for the rare disease aplastic anemia, NORD staff are wearing red to join our member organizations Aplastic Anemia and MDS International Foundation and Julia’s Wings Foundation. Learn more about the campaign with this handout or by visiting http://aamds.org/node/3761. You can learn more about aplastic anemia in NORD’s Rare Disease Database, here.
WASHINGTON D.C.—March 5, 2015—The following statement was issued today by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD)®, a leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases, following the announcement that Harold Varmus, MD, will step down as Director of the National Cancer Institute.
Harold Varmus has provided outstanding leadership to the National Cancer Institute for the past five years. Cancers increasingly are being categorized as rare diseases and many of the new drugs approved by the FDA in recent years have been for “rare” cancers. Dr. Varmus has long been a leader in researching new cancer therapies and we hope to continue to work with him in his new post at the Weill-Cornell Medical Center in New York. On behalf of the rare disease patient community, I thank him for his career-long leadership in studying the causes of cancer and in advancing research for new cancer treatments.
Peter L. Saltonstall
President and CEO, National Organization for Rare Disorders (NORD)
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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