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Patient ExperienceRare Disease Day

Rare Disease Day: Delivering Remarkable to Patients with Rare Diseases

By February 28, 2022No Comments

We’re on a mission to facilitate remarkable experiences for patients taking part in clinical trials around the world, and this is especially important for those with rare diseases.

Living with a rare disease can pose a multitude of challenges. There is often little known about the disease, and it’s vital we take the time to really listen to and understand the individual needs of patients and their caregivers. 

We’re proud of our team’s commitment to go above and beyond to support patients in a way that works for them, from the very first touchpoint through to every stage of the clinical journey.

For Rare Disease Day 2022, we caught up with some of our team to find out why they’re so passionate about what they do, and what more can be done globally to raise awareness and further the medical advancement for rare diseases. 

Meet the team 

Brittany Haltzman-Cassenti is our Senior Global Project Manager based out of our US office. Brittany works closely with patients taking part in rare disease clinical trials and is passionate about facilitating remarkable experiences for patients and their families. 

Hailey Cook is a Project Coordinator based in the US. From logistics to ensuring each patient receives the care they need, she and her team support patients and their families to access clinical trials around the world. 

Isabelle Ibrahim works with our patientprimary team as Clinical Manager for the Asia Pacific region. She’s been working hard to facilitate decentralised clinical trials in remote areas in Australia and beyond, ensuring trial continuation and excellence during the COVID-19 pandemic. 

Melanie Blair is the Senior Start-up and Departmental Training Manager based in the UK. She ensures all projects are set up effectively, and the patient’s needs are considered from the very first touchpoint. 

Hannah Pullen is a Global Project Manager based in our Bracknell, UK office. She has first hand experience of the impact of rare diseases on people’s lives and is passionate about her role in supporting the medical advancement for millions around the world. 

Heather McKenney is Vice President, Project Delivery based out of our North Carolina office. Heather worked with our team in her previous roles, particularly on protocols for rare disease trials. She’s passionate about what it means to live with a rare disease, and has three rare diseases in her family. 

Tell us a stand out time you and your team delivered something remarkable for a patient and their family taking part in a rare disease clinical trial.

Hailey Cook: “We have a family with a young daughter with an exceptionally rare disease that is undergoing treatments. The family and the daughter needed international travel arrangements and accommodations, as well as medical visa approval to come to the United States and long term housing. I was proud that our team and myself were able to provide them with the resources that they needed to come here to the United States to continue the treatments for their daughter”.

Isabelle Ibrahim: “A particular case in Australia during the midst of the pandemic saw our team working hard to navigate travel restrictions and secure permits for our HCP to visit the patient. 

“Following the first visit, we received exceptionally positive feedback from the patient on their experience. The patient expressed their relief at not having to travel interstate to remain in the trial, and said that they were impressed at the professionalism and competency of the nurse who performed the visit.”

Brittany Haltzman-Cassenti: “We’ve been able to support patients and their families who have had to be relocated across the globe. We support them not only in their travel but also financially, and by identifying local offerings from grocery stores to religious facilities”.

Isabelle Ibrahim, Clinical Manager at mdgroup

In what ways are you proud of working at mdgroup, an organisation that works so closely with patients and families impacted by Rare Diseases?

Melanie Blair: “We’re constantly evolving our service. We are very reactive to our patient feedback, especially for those with rare diseases. If we have some feedback from one of our project managers about the service, all that feedback goes full circle back into our service, and then it impacts process improvement and impacts the way that we set things up in the first place. I’m very proud that we’re always looking for ways to improve things so that that patient experience can be at its best.”

Heather McKenney:  “One of the draws for me in joining mdgroup was the opportunity to be a part of an organisation that directly aids in these patients and their families’ ongoing pursuit of treatment.  We are uniquely positioned to facilitate the opportunities for care for these patients and their families, and this is an area of our industry that I, personally, have not had the opportunity to work within. 

“We are always looking for ways to improve our processes so that the patients we have direct contact with are happy, supported, and that they know they *matter*.  We are patient-focused, and this is what I am absolutely proudest of.”

Isabelle: “I feel a great sense of purpose in my role with mdgroup in facilitating patient-centred clinical trial visits in the home / residential environment. Many patients with rare diseases have faced great adversity in their life since diagnosis, and have spent countless hours in hospitals, or outpatient medical settings already.

“To give them the chance to partake and stay in clinical trials receiving follow up and observation in the comfort of their home is hugely rewarding.”

Hannah Pullen: “I’m really proud to work for a company like mdgroup who are able to help patients to access the treatment and trials for their rare disease. Not just the patients, but being able to help their families as well makes all the difference to the patient’s experience and their journey during what can be a really stressful time.”

Hannah Pullen, Global Project Manager at mdgroup

How has your work at mdgroup brought you further awareness about patients and families living with a rare disease?

Brittany: “I always begin by researching what the disease is, to try to understand the condition. For example, one of the genetic diseases that I work on causes the patients to have some mild learning disabilities. So they may rely heavily on their parents as their caregivers. Knowing that helps me frame what we can provide as a service and what needs to go into what we’re doing”.

Hailey: “By working so closely with these families and the patients, we learn a lot about their daily lives and struggles. It has really opened my eyes to what kind of positive impacts our work has on them.”

Isabelle: “The examples I have been shown of the benefits of our service for sufferers of rare disease have been diverse – from patients sharing what it meant to them to be able to throw a ball for their dog in the backyard whilst our nurse is processing their samples, to them sharing what a weight it is off them to not have to navigate an airport or hospital car park with a physical disability.”

Heather: “Being a part of the clinical research world, but more specifically, a part of the mdgroup family, allows me an opportunity to help find new ways to bring additional support to the patients and families of those living with a rare disease. 

“The elements of everyday life that most of us take for granted can be made easier by the work that we do, this is what is so impactful to me.I feel very fortunate to help impact the lives of families searching for hope, just as my own family is.”

Hailey Cook, Project Coordinator by mdgroup

What does the work you do for rare diseases mean to you personally?

Heather: “To date, at least five of my close family members are suffering from Huntington’s Disease, which is a devastating neurodegenerative disease. My grandmother passed from HD 12 years ago, and she was a significant figure in my formative years. Losing her was hard.  

“I am hopeful that in my lifetime clinical research will find a breakthrough for patients and families living with this horrible, hateful genetic disease. I hope that one day, the younger generations of my family, and those not in my family, will have options that will eradicate this inherited disease altogether, or at the very least, make living with it much easier.  This is why I do what I do, and why I am so lucky to be in this field with so many brilliant, compassionate people.”

Hannah: “It means a lot, I have a friend who has a rare disease, and I know she suffers a lot and has constant hospital appointments. It means a lot knowing that I’m working for a company that helps people to be able to live with even just a bit less stress.”

Isabelle: “What has blown me away the most is the unwavering commitment and sacrifice from these patients, who contribute to the body of knowledge about their condition, even if this will provide no benefit to them potentially in their lifetime or at all. I am humbled, inspired and in awe of the patients with rare diseases who have been through so much in their disease journey. They are a true pleasure to be of service to.”

Melanie: “Having worked previously in rare disease, and also now continuing that at mdgroup, it’s just such a privilege. It means so much that you can impact someone else’s life. Even though I’m not working with the patient directly, the thought that I’ve set up the project that has led to these visits going ahead and this patient staying on a trial, it’s such a privilege.”

Heather McKenney, VP, Project Delivery at mdgroup

What more can be done to raise awareness and further medical advancement for rare diseases?

Brittany: “A lot of parents and folks we work with have started to advocate for their kids and themselves, and we’re discovering that some of these genetic disorders that were studied on children actually affect adults as well. By creating advocacy groups, utilising social media platforms and having them tell their story, really helps get the word out there.”

Hailey: “If there were more public awareness and knowledge of these kinds of rare diseases, then this could lead to more advocacy, and therein more public funding for novel medical advances in research for rare diseases that may be less well known.”

Isabelle: “The pandemic has helped to educate the community in general about medical adversity and start important conversations about individuals’ needs and concerns for healthcare and research access, however there is so much more that can be done to raise awareness.

“A positive experience with a service like ours, where a rare disease patient we have supported may share with another person dealing with the same or similar condition may impact that person’s willingness to consider clinical trial participation in the future, furthering medical advancement.”

Heather: We can use our voices, be advocates, volunteer,  fundraise, support the research community and, more importantly, support the families and patients who need it.   

“Rare disease research is an area of research that many don’t often think of. Rare diseases aren’t one of the “big” ones: Cancer, Heart Disease, Diabetes… but rare diseases deserve our attention too.  

“I recently learned why the Zebra is the symbol for Rare Disease:  medical students are taught, “when you hear hoofbeats, think of horses , not zebras.”  Sometimes, when there are hoofbeats, there’s a zebra in the band of horses.”

Find out how we’re delivering remarkable for patients taking part in rare disease clinical trials. Get in touch today.

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