Monday, February 19, 2018

Rare Disease Day at NIH 2018

Rare Disease Day® takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Each year, NCATS and the NIH Clinical Center sponsor Rare Disease Day at NIH as part of this global observance. This year’s global theme is "Research" continuing from 2017, and the slogan is “Patients are not only subjects but also proactive actors in research.”

2018 Event Information

Rare Disease Day logo
Thursday, March 1
8:30 a.m. – 4:00 p.m. ET
Masur Auditorium, Building 10
National Institutes of Health
Bethesda, Maryland

Sponsored by NCATS and the NIH Clinical Center (CC), the event will feature presentations, posters, exhibits, an art show and CC tours. Admission is free and open to the public. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans. Be sure to follow the event on social media using #RDDNIH.

About Rare Disease Day

A young boy with plastic bronchitis.
EURORDIS sponsored the first Rare Disease Day in Europe on Feb. 29, 2008. The United States joined the first global observance the following year along with 23 other countries. Visit Rare Disease Day USA and International Rare Disease Day for more information.

About Rare Disease Day at NIH

Each year since 2010, the slogan for NIH’s event has been “Patients & Researchers — Partners for Life.”  This slogan aligns with NCATS’ philosophy that researchers must work closely with patients, families, caregivers and advocacy groups to maximize the chances for success in advancing rare diseases research. This philosophy has been put into practice in NCATS’ Rare Diseases Clinical Research Network, Therapeutics for Rare and Neglected Diseases program, and the Genetic and Rare Diseases Information Center, among other efforts.

The goals of Rare Disease Day at NIH are to:
  • Demonstrate and reiterate the NIH commitment to rare diseases research to help patients.
  • Highlight NIH-supported rare diseases research and the development of diagnostics and treatments.
  • Initiate a mutually beneficial dialogue among public and private researchers, patients, patient advocates, and policymakers.
  • Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts.
  • Put a face on rare diseases by sharing stories of patients, their families and their communities.
Learn more about past Rare Disease Day at NIH events.

NCATS and Rare Diseases Research

The Frase family
About 7,000 rare diseases affect humans, of which only a few hundred have any treatment. Although each rare disease affects fewer than 200,000 Americans, in total these illnesses affect an estimated 25 million people in the United States. Less than 5 percent of rare diseases have a treatment.
NCATS is all about getting more treatments to more patients more quickly. The Center tackles rare diseases research through collaborative projects to study the commonalities and underlying molecular causes of these disorders. This approach creates the potential to speed the development of treatments for a number of rare and common diseases at the same time.

Wednesday, January 24, 2018

Student Interview with Managed Care Nurses

People who are considering nursing and nursing specialties as a career option will have a ton of questions to ask and research to be done before and after they commit to an educational program. Here, within the American Association of Managed Care Nurses (AAMCN), we get many students who inquire about what it takes to work as a nurse in the managed care arena. We have named some of these popular questions below and our AAMCN Leadership Council has provided insightful answers. 

Students earning their initial nursing degree are invited to join AAMCN at the discounted membership rate of $15. As a member, they receive all of the regular member benefits like our Mentor Program, continuing education activities, our career center and more...

What kinds of problems do you deal with?

  • Team development (i.e. pursuing additional education, certifications, or other positions)
  • Hiring, training, staff education
  • Ensuring staff have appropriate tools to do their jobs
  • Budget and staff funding
  • Projects (regional and national)
  • Outcome measurements
  • Uncertainty with the current political process and health plan implications
  • Meeting regulatory and accreditation requirements
  • Managing challenging members
  • Taking all of the above into consideration when preparing responses to RFP (request for proposal) for new business, and then ensuring all areas are covered when working on implementation and preparation for readiness 

What kinds of decisions do you make?

  • Budget planning
  • Hiring and staffing decisions
  • Work collaboratively with Human Resources and other members of the care coordination team
  • Team placement for projects (i.e. matching team member interests with the project)
  • Patient management
  • Processing of new clients
  • System/program selections
  • Strategic decisions related to the functioning of the department
  • Decisions related to Clinical Services as a function of work stream lead in implementation, and many initiatives affecting clinical services in our Clinical Strategic Initiatives team
  • All decisions made put the member FIRST

How does your job affect your general lifestyle?

  • Encourages one to think ethically in work and personal life with an emphasis on kindness and the ‘Golden Rule’ (do unto others as you would have them do unto you).
  • Ultimately, we are all accountable to the members we serve, and some contracts require responses in a VERY timely manner.
  • It varies with time of year and the status of projects. When one is close to Readiness Review, Go-Live and just after, hours can be long. Our UM Nurses do feel stretched at times, especially close to holiday time as they work diligently to complete discharge. planning/reviews so the Member gets what he/she needs for a successful transition.
  • The accountability and responsibility for the department and meeting the membership needs can interfere with work-life balance, and that is why it is important to prioritize.

Is it important to keep up with current issues and trends in the field?

  • Always continue to keep up with current educational activities and collaborate with colleagues. Staying current will improve your job security.
  • Diversify your skills and competencies. Keeping your skills up to date, being aware of what is happening in the industry and political environment is crucial.
  • What related fields do you think I should consider looking into?
  • Other health care careers, such as Ultrasound, Echocardiography, Informatics, Data Analytics, Health Care Compliance, Program Integrity, and Government jobs

What kind of education, training, or background does your job require?

  • RNs, LPN/LVNs, social workers, professional counselors, and other healthcare workers can work in a managed care capacity.
  • Employers will list the required education and training for an open position, but often place candidates who have achieved specialty education high in their consideration.

What are the most effective strategies for seeking a position in the field?  

  • Prior experience (but not mandatory)
  • Knowledge, expertise, and the drive to learn
  • Sustained enthusiasm
  • Computer literacy
  • Awards, recognitions, or certifications achieved
  • Networking with professionals in the community

Thursday, January 18, 2018

Cervical Health Awareness Month

January is Cervical Health Awareness Month, and AAMCN wants you to know that there’s a lot you can do to prevent cervical cancer. Each year, more than 11,000 women in the United States get cervical cancer.

HPV (human papillomavirus) is a very common infection that spreads through sexual activity, and it causes almost all cases of cervical cancer. About 79 million Americans currently have HPV, but many people with HPV don’t know they are infected.

The good news?
  • The HPV vaccine (shot) can prevent HPV.
  • Cervical cancer can often be prevented with regular screening tests and follow-up care.
In honor of National Cervical Health Awareness Month, AAMCN encourages:
  • Women to start getting regular cervical cancer screenings at age 21
  • Parents to make sure pre-teens get the HPV vaccine at age 11 or 12
Teens and young adults also need to get the HPV vaccine if they didn’t get it as pre-teens. Women up to age 26 and men up to age 21 can still get the vaccine.

Thanks to the health care reform law, you and your family members may be able to get these services at no cost to you. Check with your insurance company to learn more.
Taking small steps can help keep you safe and healthy.

For more information, visit the National Cervical Cancer Coalition's website