The Rare Roundup

Winter 2022 | Vol. 5

The official Newsletter of Rare Disease Research, LLC

"The best and most beautiful things in the world cannot be seen or even touched - they must be felt with the heart.”"

- Helen Keller

Happy New Year!

It is so exciting to ring in 2022, as 2021 has been an eventful year for all of us -- from the site relocation to the pandemic that seems to drag on forever. But together, we worked hard to overcome challenges and managed to have some fun through the process. In this issue of our newsletter is a look back at some of the accomplishments and activities RDR engaged in as a team at the end of 2021.


TRIAL AND CAREER OPPORTUNITIES

CURRENT TRIALS

We are currently pre-screening or recruiting for trials for the following conditions:

  • Migraine
  • Myotonic Dystrophy Type 1
  • Spinal Muscular Atrophy
  • Fragile X Syndrome
  • Prader Willi Syndrome
  • CDKL5 Deficiency Disorder

...and many more are coming soon!

CURRENT JOB OPENINGS

Consider joining our team! We're hiring for the following positions:

  • Pediatric Nurse (RN)
  • Clinical Research Coordinator
  • Clinical Research Assistant
  • HR Administrator
  • Pharmacy Technician

Location: Atlanta, GA (in-person)
Office hours: Monday - Friday 8:00am-4:30pm
For more information and descriptions of each role, please visit Careers.


COLLABORATION ANNOUNCEMENT: RARE STRIDES

This past year, RDR began a collaboration with Rare STRIDES, an organization based in Georgia whose mission is “to empower patients and medical teams with innovative tools to successfully fight rare diseases." Rare STRIDES takes a multi-faceted approach to this goal, and the team is especially focused on educating others in order to organize "the delivery of exceptional clinical care for rare patients in every medical setting."

The CODE RARE program is specially designed to advance patient-centered care delivery and diagnostics for patients with rare disease. An invaluable tool for first responders and hospitals, it will trigger immediate education delivery and specialized resources when providing care to rare patients. Rare STRIDES also provides many other services, including, but not limited to the following:

  • assistance and mentorship for rare disease non-profits, helping them to gain visibility in healthcare
  • Rare Wish, a program that helps grant a wish for children with a rare disease
  • the Rare STRIDES Nurses Speakers Bureau, which hosts clinical training sessions and Grand Rounds to educate medical professionals about providing care for rare disease patients
    ...all of which help achieve the goal of making rare visible.

MEDIA AND NEWS ATTENTION

Because of their amazing work, Rare STRIDES has received attention from many news and media sources, and has recently been nominated for a Gwinnett Chamber of Commerce Small Business award.

In January 2022, co-founder Beth Nguyen has also been featured by VoyageATL magazine for her outstanding work in the rare community. Beth has not only formed and cultivated Rare STRIDES, but she also serves as the Georgia Volunteer State Ambassador, collaborating with the National Organization for Rare Disorders (NORD) to establish Georgia's first Rare Disease Council. As a nurse and rare disease patient herself, Beth is an inspiration to us and many others, and an example of perseverance and compassion.


COLLABORATION ANNOUNCEMENT: RARE STRIDES

We are proud to work together with Rare STRIDES to advance the joint mission of making rare visible and providing access to investigational treatments for members of the rare community. We will work to promote each others' goals in a variety of ways, including, but not limited to the following:

  • Providing the opportunity for interns to cross-train with both RDR and Rare Strides. This effort will provide opportunities for interns to learn about improving medical care for rare disease patients, as well as opportunities and challenges faced in clinical trials for rare diseases
  • Inviting the Rare STRIDES Nurses Speaker's Bureau leadership to present at RDR sponsored events. RDR will use its platforms within the rare community to bolster and help spread awareness of the Rare STRIDES mission.
  • Providing trial participants and medical teams with information about Rare STRIDES as a resource to those seeking support for their rare journey. This effort will help connect patients and medical teams with the educational material and numerous resources offered by Rare STRIDES.

Please visit the Rare STRIDES website and connect on social media to learn more!

WANT TO LEARN MORE?

facebook.com/rarestrides
twitter.com/rarestrides
instagram.com/rarestrides
linkedin.com/company/rarestrides
 


STAFFING NEWS

Welcome, New Staff!

Our team continues to grow to accommodate more exciting studies coming our way. Please help us welcome the following new staff to the RDR family:

IBAAD KHAN | CLINICAL RESEARCH ASSISTANT

Ibaad recently graduated from Emory University with a degree in Biology. He previously did his undergraduate research assistantship at the Aflac Cancer & Blood Disorders Center. He currently serves as a mentor and ambassador board member of the myLIFE program at the Emory Autism Center.

KIRSTEN  | PHYSICAL THERAPIST

With more than 20 years of experience as a physical therapist, Kirsten will serve as a clinical evaluator for many studies where various physical assessments are required. Kirsten completed her Master’s in Physical Therapy at Emory University and her Doctorate at Arcadia University. She enjoys running, practicing yoga, and painting.

LISA GLASFORD | CLINICAL RESEARCH ASSISTANT

Lisa has extensive experience with medical data collection, record keeping, and workflow management. She joins our team after several years of working with Infectious Disease Specialists of Atlanta. In her spare time, Lisa loves to read and does arts & crafts.

STEVEN NGUYEN | CLINICAL RESEARCH ASSISTANT/SOFTWARE DEVELOPER

A recent graduate of Georgia State University, Steven will bring his Computer Science background to eventually build an IT department for RDR. Steven likes to cook in his free time. We look forward to trying one of his cooking creations in the near future!

KALLIE PLATT | NURSE PRACTITIONER

Kallie is an acute care pediatric nurse practitioner. She previously worked as a charge nurse at Children’s Healthcare of Atlanta. Kallie earned her undergraduate at Georgia Regents University and her Master in Nursing from Emory University. She enjoys hiking, traveling and is a Georgia football fan.

DONNA SPAULDING | RECEPTIONIST/PATIENT CARE SPECIALIST

Donna joins our team after more than 15 years at Children’s Healthcare of Atlanta where she served as a patient care technician. With such a warm and caring disposition, Donna is the perfect person to welcome our patients and guests! And we’ll let you in on a secret: Donna loves to bake. Please get in line, all you cake lovers out there!

WANT TO SEE YOURSELF UP HERE?

We're expanding, and we're looking for passionate, dedicated individuals to join our team! Check out the list of open positions on page 3 of this newsletter, and don't hesitate to contact us at Info@RareDiseaseResearch.com with any questions. Submit your CV, and we will get back to you as soon as possible.

RARE Are They Now?

Where have some of our former staff ended up? It was hard to say goodbye, but we are
extremely proud of what they have accomplished! We're confident that they'll be successful on whatever path they take next.

EDUARDO SANABRIA, PHD, "DR. S"

Dr. Sanabria, former RDR clinical trial liaison, is now a Medical Science Liaison
for the pharmaceutical company AbbVie. Congrats, Dr. S! You brought so many
memorable and joyful moments to RDR, and we're excited to see what you
accomplish next.

BRITTANY DANIELLY, MPH

After completing her dual Master’s in Public Health & Business
Administration this past fall, Brittany has joined PPD as a Clinical Research
Associate. Way to go, Brittany! Even in the busiest of trials, former CRC
Brittany always managed to stay cool and collected under pressure. We're
wishing her the very best in all her future endeavors!

DILLON DANG

Dillon has been accepted to medical school and will be moving back to
Florida to get ready for his next adventure. In his time with RDR as a
research assistant, Dillon proved to be a positive and capable
teammate willing to tackle any challenge. We hope to have you join us
as an investigator in the future, Dillon.

NICHOLAS BUTLER, MS

Nicholas has decided that the Dawgs’ win over Alabama is not enough
to keep him in Georgia, so he’s moving to Austin, TX! He will be
working with XBiotech as a CRA. As the go-to coordinator for one of
our larger studies, we're confident Nicholas will put his talents (and his
clever wit) to excellent use in his new role.

 


ALL IN A RARE DAY'S WORK...

At RDR we like to joke! Here is a glimpse of some of our recent laughs.

BE CAREFUL WHAT YOU ASK FOR...
One day in the RDR Group Chat:

- Ibaad (our newest team member):
Hi team, what other languages does everyone speak?
- Trang: Vietnamese and Football
- Marcial: Southern!
- Ibaad: ?!?!?

In reality, our office is quite multilingual! These are some of the languages our staff can speak:

  • Spanish
  • Vietnamese
  • Hindi
  • Slovak
  • Russian

WHEN YOU THOUGHT YOU WOULD GET SOME SYMPATHY...

As occurred in the RDR pharmacy:

- Trang (to Marcial & Jona): I don’t know why my left knee has been hurting-so bad.
- Marcial: How is the person that you kicked?
- Trang: Huh???

Watch out for Marcial; he is one of our biggest jokesters!!