Joe Clymer – Supplementing The Medical School Curriculum One Rare Disease at a Time

Joe Clymer – Supplementing The Medical School Curriculum One Rare Disease at a Time

Joe Clymer is a 5th-year medical student. Over the summer of 2023, he completed a 75-hour internship with the Cambridge Rare Disease Network. This internship aimed to identify common problems that families with rare diseases face and create a set of resources to help. Joe describes his inspiration, findings, and future plans in the following blog.


What I did during my internship

I spent about 10 hours speaking to families and reading about common problems. I spent the next 65 hours researching what they told me in detail and drawing on my clinical knowledge to find new solutions.

I have just finished five years of university, encompassing four years of medical school and one year of specialised Emergency medicine (EM) teaching. Before starting at CamRare, I spent my days in the back of ambulances or diagnosing patients in the emergency department. My year in EM was high-octane and exciting and not full of older adults falling over or teenagers with the flu. So why, on my summer off, did I make the change to work with a rare disease charity? The short answer is that I believed in what they wanted to achieve. The long answer is to read the rest of this blog.

Image shows a young male with light brown hair raising his hand 'hello' and dressed in a diving suit.

Why I chose CamRare

I started at Keele University at the age of 18. I was fortunate to get in first time due to my preparation, dedication to medicine and a healthy amount of luck. When I arrived, I thought I knew I had to learn the science and treat patients. How wrong I was. As I later learned, good medicine is about holistically treating the individual, not the disease. It’s about biology, psychology and sociology. I also learned how societal inequalities, like race and wealth, affect health outcomes.

Let me give you an example. In Stoke on Trent, the city I trained in, there is an 8-year difference in life expectancy between the rich and the poor: same city, GPs, and NHS services. The only difference is finance. Throughout medical school, I became more aware that these differences exist. I came across the CamRare internship, and by working with them, we aimed to provide free information to help make healthcare more equitable.

CamRare has a community called the Unique Feet (UF) Community. They are a group of families whose children have rare diseases and do fun activities together so their children can have a more normal life. My job was interviewing parents, finding out their financial and social problems, and working with the community to find solutions. I have made a resources page on different ways to get funding for children with rare diseases, which may directly benefit their children’s care. I learned in medical school that social and psychological factors are as important as medical treatment in managing chronic diseases. CamRare is a charity that recognises this and is working to assist.

As a medical student, I have a very narrow skill set, including communication skills, empathy, and an understanding of science. I possess a strong and thorough comprehension of the shortcomings of the NHS. Fortunately, these skills meant I was perfect for this internship. Our NHS is excellent at providing life-saving care but is less excellent at providing long-term care to patients with chronic diseases; try getting a GP appointment. I understand rare diseases and the NHS, so I was ideally placed to discuss problems and potential solutions around health and social care.

I also chose to work with CamRare because of their amazing work for parents and families with rare diseases. The Unique Feet project, described below, provides a community and care for people who would otherwise be isolated. But unlike most charities, CamRare doesn’t just do one thing; they also invest in raising awareness amongst doctors and research, putting patients in direct contact with industry and hosting an annual research summit to discuss ideas.

Who are the Unique Feet (UF) community

Since its birth in 2016, community and problem-solving have been at the group’s core. Mums meet for coffee, and parents share information about the benefits of child genetic testing by exchanging consultants’ phone numbers. (I’m unsure how the consultants feel about this, but if children didn’t wait six months for basic tests, their parents might be more patient). Suppose you have a problem with your child’s rare disease. Who better to ask than a group who’ve been through this before? Helping each other is at this group’s core, so I had no trouble getting interviews with these busy parents so they could help me type up their knowledge for the website.

CamRare is a particularly good support group because rare diseases aren’t that rare. 1/17 people will have a rare disease, with most starting in childhood. But if only five people in the country have the same disease, and you have no idea where they are, where do you go for support? The UF team arrange 2-6 activities a month for families with rare and undiagnosed diseases. With children and parents coming and mixing, it turned into a support group over the years. Parents shared stories about their problems, and others listened and gave advice. New parents joining had new problems discussed informally whilst climbing and pond dipping, and together, a community was built that advised and helped each other.

To further develop this community, siblings come to activities. It can be challenging for siblings of disabled children; they often get less attention and have more responsibility. At UF, children with and without disabilities play and interact together, and the parents love it because their children can be children in a free, non-judgmental space. What started as play for children has turned into a supportive community that is irreplaceable for parents.


Parenting a child with a rare disease is difficult. Many parents say they have felt isolated and question their parenting ability. But by attending events and speaking to other parents in the same position, the supportive community helps to listen and get through situations they have all gone through. I decided to look into support for parents and used quotes from our UF members to signpost parents to mental health services. It’s hard to accept support, but hopefully, by formalising it online so people know that others have gone through the same things, parents will be more likely to reach out.

What I learned

My first job was to sit down and interview the parents in the UF community. They would tell me the common challenges they faced and how they solved them. I would then take this information, read around the subject, and present it as a fact sheet on the website. These interviews were tough. I asked them to discuss their feeling about the worst days of their lives. We discussed mental health and the fear of not knowing if your child would survive. In my 8 hours of interviews, I saw what it might be like caring for these children and developed a deep admiration for the parents I spoke to. They’d battled through a difficult school system, nightmare social services visits, long delays on appointments, difficult-to-understand doctors and a sheer volume of hospital appointments that the best secretaries in the world would struggle to keep up with.

All of this went on for years, yet every one of them had volunteered their own time in their busy lives to sit and talk to me so I could share their information and perhaps make things easier for the next family; I believe that is the mark of a community that cares. The parents taught me a lot, and with their knowledge, I could move forward to researching their problems.

These interviews gave me invaluable exposure to rare diseases. Rare diseases often present complex medical challenges, and these interviews exposed me to a diverse range of conditions. This exposure helps broaden my diagnostic and problem-solving skills, as I have encountered conditions not covered extensively in my medical curriculum.

I also developed my communication skills. Families face unique emotional and psychological burdens due to the rarity of the condition and the challenges in obtaining accurate diagnoses and appropriate treatments. Interacting with these families enhanced my ability to communicate with empathy and sensitivity, skills that are crucial for all medical professionals. I was most grateful for the openness and honesty the UF families gave me.

From the interviews, I identified six topics parents would like more information on and set about gathering information on them. One area that didn’t make it in but deserves an honourable mention was the theme of fighting. All the parents emphasised the importance of fighting for their child’s needs. I heard many stories about appealing educational health care plans and disabled living allowances. These parents pointed out that these benefits and support are out there but not easy to find, and it can be hard to get what you deserve.

“Whilst researching solutions to common problems, I realised rare diseases often lack established treatment protocols, and I saw the importance of understanding the needs of UF community. It made me reflect on how far we still have to go in modern medicine to design a system that is equitable to all. I also realised how important industry investment and research into rare diseases is to finding treatment for these diseases.”

My future

CamRARE offered me an amazing experience to engage thoroughly and understand rare diseases, and it’s one that I shall carry into my medical career. Beyond clinical skills, I believe it nurtured empathy, research acumen, advocacy skills, and a profound interest in the rare community. These benefits will help me shape into a well-rounded, compassionate, and proactive medical professional who is now better prepared to address the unique challenges presented by rare diseases and make a meaningful difference in the lives of patients and their families. This internship exposed me to diverse perspectives and challenged me to confront medical uncertainties. Dealing with rare diseases teaches humility, resilience, and adaptability, essential in a medical career. It made me think about the challenges facing the provision of equitable care to a wide range of patients and their families.

I have learned many practical skills. I have learned about benefits, housing, genetic testing and education for disabled children. I have been involved in web design and building wireframes. I have been free to work independently under a boss who has trusted me to guide my project, and I have delivered on time. But most of all, I have been part of a project I believe in. Health is made up of biological, psychological and social components.

I have worked with CamRare and their community to build resources to address psychological and social support for families that need them. And if I’m a halfway decent doctor, I think I should have the biological bit sorted. 

Image shows a young male with light facial hair dressed in a protective red suit in a hospital setting. He is smiling.

Cell and Gene Therapies Transform the Rare Disease Horizon – Are We Ready to Deliver Advanced Therapies? The Perspective of Sheela Upadhyaya, a Rare Disease Consultant

Cell and Gene Therapies Transform the Rare Disease Horizon – Are We Ready to Deliver Advanced Therapies? The Perspective of Sheela Upadhyaya, a Rare Disease Consultant

Cell and gene therapies transform the rare disease horizon. They hold the power to transform patient’s lives. Are we ready to deliver Advanced Therapies? Sheela Upadhyaya is an independent rare disease consultant who has eighteen years of experience in the rare disease arena. She discusses the challenges and opportunities involved, expressing that collaboration is the key to helping deliver them synergistically.


Sheela Upadhyaya

Sheela Upadhyaya, an Independent Rare Disease Consultant, spends her days liaising with all parties that form the rare disease arena. She has had exposure to every nook of the rare disease community from patients and their supporting organisations, highly skilled clinicians, policymakers, and pharmaceutical companies. Her mission involves anything and everything which supports and cares for those with rare diseases, aiming to better their lives.

Sheela is immensely equipped for this endeavour, having worn many hats. She has spent the last twenty-five years in the life sciences industry. Her journey into the rare disease community came to fruition by fluke when she applied to work a role commissioning rare disease service, primarily in Genetics and Metabolic, for the NHS. Sheela then moved on to lead the NICE Highly Specialised Technology Programme at NICE. The programme evaluates medicines and technologies for very rare conditions. Sheela was also instrumental in delivering a strategic response for NICE against the Rare Disease Framework.

Sheela quickly learned that rare diseases are immensely underserved, recognising a real need for listening to the needs of rare disease patients and their lived experiences. This need for empathy, transparency, and uniting perspectives inspired her to continue championing the rare disease community, to which she has now contributed for the last eighteen years.

Sheela is shown from the shoulders up wearing a white shirt. She has dark waved hair to the shoulders and wears dark red lipstick.

“I pride myself in listening as much as I can to the needs of patients, their supporters, carers, and family members, so I can reflect that back in what I aim to deliver. But part of my role is also explaining why some things can’t happen.”

The Advancement of Rare Disease Therapies

Throughout her time working with the rare disease community, Sheela has witnessed the evolution of Advanced Therapies, or advanced therapeutics, which hold the power to transform the rare disease horizon. Advanced Therapies include interventions such as cell or gene therapies, which alter the molecular makeup of those with rare diseases, changing the expression or course of their condition. They focus on correcting the root cause of the disease as opposed to treating the symptoms. For many with rare diseases, they can transform what this means for day-to-day life and their future.

In the last five years, collaborative teams have made huge advances in innovating and successfully delivering these treatments to the rare diseases community. 2022 was a landmark year for such interventions, with Upstaza for AADC deficiency and Roctavian for Haemophilia A making their way into healthcare provisions. However, as the gene therapy field continues to advance, significant challenges remain, from their safety and efficacy to their accessibility and the suite of logistical considerations involved in their delivery to their recipients.

The healthcare system isn’t always ready to receive new therapies with complex storage, staffing, and infrastructural issues which may be unique to every new treatment, at each step. The healthcare system must shift and adapt to this each time, which is a huge challenge.

“To give an analogy concerning a single issue, storage: how many fridges is a hospital expected to have for each of these therapies, which may each have different storage requirements, which might only be for one or two patients?”

Collaborating for Successful Delivery

Though gene and cell therapies have become available to small, select groups of rare disease patients, 95% of rare diseases still have no therapies available to them. Sheela highlights how meaningful collaboration with patients is instrumental to developing new therapies and setting realistic expectations for how and why pre-existing therapies are delayed, aren’t widely accessible, or are not affordable. In short, “it is not as easy as it sounds, despite many parties with the same good intentions working really hard to deliver them for patients.”

As options for Advanced Therapies develop, the pertinence of these pressing challenges expands with them. Sheela expressed how collaboration between all stakeholders is necessary:

“For example, in returning to the fridge analogy, it is essential for pharmaceutical developers and manufacturers to consider the relevant infrastructural considerations. Without this approach, it would create unnecessary inefficiency in a healthcare system that strives to be as efficient as possible and whose efficiency is instrumental in delivering successful patient care. It goes both ways – those managing healthcare provisions must be open-minded in accommodating novel delivery approaches, which may change the status quo of how things have been done.”

For patients, Sheela describes how collaboration and transparency in raising the conversation about the stark challenges in implementing advanced therapies are essential for helping patients and their supporters orient themselves through layers of decision-making, the impact on their lived experience with their condition, and how they feel about these prospects.


Picture shows DNA lit up in bright colours on a dark background

Bringing Stakeholders Together

At Raresummit23, Sheela, alongside CamRARE Trustee, Emma Green, will host a panel discussion on Advanced Therapies, particularly navigating challenges and fostering collaboration for patient access. It is rare to see all stakeholders in a project represented, more so sat in physical proximity. The panel brings together an impressive wealth of experience and expertise which reflect the complex journey of Advanced Therapies’ innovation, development, delivery, and application. The panel allows for candidly discussing challenges with transparency, combining multi-stakeholder perspectives, and providing the most holistic approach to improving patient outcomes.

As Sheela knows too well, the science of Advanced Therapies is incredibly exciting, especially for patients. Collaboration is the key to helping deliver them synergistically:

“The hope is that anyone interested will leave with a better understanding of the layers of complexity: from innovation to pre-treatment activities, to their delivery in a healthcare setting, to post-treatment care. Each panel member will bring their own nuggets of insight and education we’ve not heard before.”

“While we should celebrate that progress is being made to deliver these important medicines to patients, we acknowledge that there are still challenges in the journey ahead. Our objective is to foster collaboration, raise awareness of the complexities, and pave the way for a future where patient access to Advanced Therapies is seamless, equitable, and life-changing.”

Emma Green

Trustee, CamRARE

Join Sheela, Emma, and the panel for this dynamic discussion at RARESummit23. They are solving challenges through collaboration.

Learning from the Rare Disease Community: Enhancing Facial Recognition AI Technologies for Improved Accuracy in Identifying Individuals with Facial Deformities

Learning from the Rare Disease Community: Enhancing Facial Recognition AI Technologies for Improved Accuracy in Identifying Individuals with Facial Deformities

Facial recognition technology has made significant advancements in recent years, transforming various industries and enabling efficient identification and authentication processes. However, one area where these technologies often fall short is accurately recognising individuals with facial deformities. This limitation has profound implications for people with facial deformities, who may experience challenges in accessing services, completing job applications, security checkpoints, and even social interactions. This blog explores how artificial intelligence (AI) could play a pivotal role in improving facial recognition technologies to accurately identify individuals with facial deformities.


Understanding the challenges

Facial deformities encompass a wide range of conditions, including craniofacial anomalies, burns, scars, birth defects, and other facial irregularities due to rare diseases. These conditions can significantly alter an individual’s facial features, making it difficult for conventional facial recognition systems to identify them accurately. Traditional algorithms are often trained on databases that primarily consist of images of individuals with typical facial appearances, resulting in biased models that struggle to recognise those with facial deformities. Amit Ghose, an Asian male born with Neurofibromatosis Type 1 (NF1) resulting in facial deformities, knows only too well the issues with AI and facial recognition:

“I feel that that AI is quite discriminatory. And someone who lacks confidence or someone who is insecure about their appearance already, to have that lack of facial recognition and rejection could be quite detrimental to their already lack of confidence that they have.”

Amit was determined to find out if AI could be improved to help in specific uses such as security at airports. His initial research highlighted that the solution seemed to be to bypass the system, and for those individuals not recognised, they would be escorted manually.  For Amit, this felt wrong.

“You can imagine if you’ve got a queue behind you, how humiliated you could feel if the system was still rejecting you. Now, how is that solution just to let people bypass a security feature?”

Amit Ghose

Motivational speaker, coach

The Role of AI in Improving Accuracy

Artificial intelligence offers promising solutions to address facial recognition technologies’ limitations when identifying individuals with facial deformities. By leveraging algorithms and advanced machine learning techniques, there is a very real opportunity to drive positive change for inclusivity. And that approach has to include partnership working with those communities that would benefit, as Amit suggests:

“The solution should be that you work with us to enhance the software and the application. You need to work with us to understand and raise awareness of the issues we face. So software companies, you guys need to do something.”


Amit suggests a call to action could include the following:


  • Diverse and Inclusive Training Data: To overcome the bias in training data, AI algorithms should be trained on more diverse datasets that include images of individuals with various facial deformities. Collecting and curating extensive databases with labeled images of individuals with facial anomalies can significantly improve the accuracy and reliability of facial recognition systems for this population.
  • Transfer Learning: Transfer learning enables the application of pre-trained models that have been trained on large-scale datasets, such as general facial recognition databases. These models can be fine-tuned using smaller, specialised datasets of individuals with facial deformities. By building upon the existing knowledge of facial features, transfer learning can improve the accuracy of recognition for individuals with facial anomalies.
  • 3D Facial Recognition: Conventional facial recognition systems primarily rely on 2D images, which may struggle to accurately capture and identify unique facial characteristics in individuals with deformities. 3D facial recognition, utilising depth-sensing cameras or other technologies, can capture the three-dimensional structure of a face, including subtle details. AI algorithms can then be trained to process this data and recognise individuals with greater accuracy, even in the presence of facial deformities.
  • Facial Landmark Detection: AI algorithms can be employed to detect facial landmarks, such as the position of the eyes, nose, and mouth, in individuals with facial deformities. By accurately identifying these key points, algorithms can normalise the facial images, compensating for deformities and making recognition more reliable.
  • Adaptive Algorithms: AI-powered facial recognition systems should employ adaptive algorithms that continuously learn and adapt to the unique facial features of individuals with deformities. This adaptive approach would allow the system to refine its recognition capabilities over time, enhancing accuracy and reducing false negatives.
  • Ethical Considerations: As with any AI application, there are important ethical considerations when it comes to facial recognition technologies for individuals with facial deformities. The utmost care must be taken to ensure privacy, data security, and protection against potential misuse or discrimination. Transparent data collection and model development processes, as well as ongoing audits, can help address these concerns and ensure that the technology is used in an ethical and responsible manner.


A future with AI

Facial recognition technologies hold immense potential to improve the lives of individuals with facial deformities by enabling accurate identification and access to various services. By harnessing the power of AI, through diverse training data, transfer learning, 3D recognition, facial landmark detection, and adaptive algorithms, we can overcome the limitations of current systems.

However, it is crucial to approach the development and deployment of these technologies with a deep commitment to inclusivity, fairness, and privacy. And to work closely with organisations, networks and individuals like Amit who experience and understand the challenges and wish to support AI technologies to develop and recognise them. With continued advancements and ethical considerations, AI can revolutionise facial recognition, providing a more equitable and accessible future for individuals with facial deformities.

“I think when it comes to educating everyone about how to deal with people with visible differences and also with rare diseases is where you can, as much as you can, try and treat them with that dignity, that they are normal and normalise everything.”

Amit Ghose

Motivational speaker, coach

We throw down the gauntlet to those working with AI to come and join us at RARESummit23. Amit will join us, alongside a wealth of diverse speakers, set to delve into the rare disease communities’ most pressing questions, scientific advances, and wishes for the future.


I Am One Of You! Overcoming Obstacles: The Journey of a Young DeafBlind Rare Disease Disabled Scientist in the STEM Industry

I Am One Of You! Overcoming Obstacles: The Journey of a Young DeafBlind Rare Disease Disabled Scientist in the STEM Industry

Can you imagine being a young, ambitious, deafblind scientist with a small handful of rare diseases and being passionate about disability advocacy, determined to make your mark in the competitive world of Science, Technology, Engineering, and Mathematics (STEM)? Then, meet Max, who is doing exactly that. This is the inspiring story of Max Fisher, who faces extraordinary challenges in their pursuit of a career in the STEM industry. Max is a cell line engineer at Revvity and co-lead of their new Disability Employee Resource Group.


Max Fisher

Max is DeafBlind, has Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Visual Snow Syndrome, and Cold Urticaria. Ehlers-Danlos Syndrome (EDS) is a connective tissue disorder that causes chronic pain and joint dislocations. Postural Orthostatic Tachycardia Syndrome is a neurological condition that affects Max’s heart and causes fainting, tachycardia, and palpitations. Cold Urticaria means Max is allergic to the cold- touching cold causes hives, and breathing cold air causes Max’s airway to swell up. Visual Snow Syndrome causes TV static across their entire vision, as well as light sensitivity, night blindness, and afterimages. Max is also deaf.

Max’s journey as a young deafblind disabled scientist is filled with barriers and prejudices, yet it also showcases the resilience, tenacity, and determination required to break through these obstacles and make a profound impact on the scientific community.

Image shows a person in a light brown shirt with teal slick back hair and tinted glasses from the shoulders up. They are smiling.

“I am a DeafBlind and Disabled Scientist, and I advocate for people like me with rare diseases in STEM. Life with a rare disease in STEM has been difficult. From university employment teams telling me I’d never make it into a lab, to industry assuming I can’t get into the building. In fact, my disabilities make me a better scientist, and make me better at adapting to a changing situation than others.”

Understanding the Rare Disability

Before delving into the challenges faced by this remarkable scientist, who studied Pharmacology at University, it is essential to understand the unique nature of their disability. Being both deaf and visually impaired alongside rare disease complications means that Max is presented with a set of obstacles that few can comprehend. 

As Max indicates: there is such a stigma around disability that it kept them unemployed for 3 and a half years. For 7 and a half years- throughout their undergraduate degree, postgraduate degree, and unemployment, they were told that they could not be a scientist because they are disabled. But, in their words, they are the phenomenal scientist they are because they are disabled.

Limited Job Opportunities

Despite possessing a brilliant mind and strong scientific acumen, Max notes that finding limited job opportunities in the STEM industry is normal. It took Max over three years of unemployment to realise that the issue did not lie with Max but with employers who overlooked Max’s capabilities due to preconceived notions about the capabilities of people with disabilities, especially those with multiple sensory impairments. The competitive nature of the job market compounds this issue further. Max knows this only too well:

“In an interview, everything was going well. They asked me about team working skills and leadership skills, and I talked about being a wheelchair basketball coach… “wheelchair…? basketball?” interview terminated as they “had everything they needed.”


Max Fisher is standing in a white lab coat alongside two colleagues. they are stood at a table presenting their science to guests of RAREfest22.

Attitudes and Prejudices

One of the most significant challenges faced by any young disabled scientist is combating the attitudes and prejudices prevalent in society. Many people hold misconceptions about the capabilities of disabled people, assuming they cannot perform at the same level as their non-disabled peers. Max is frustrated that people have closed minds, jump to conclusions and do not listen. These prejudices can result in subtle discrimination, intentional or not, which impacts confidence and self-esteem:

“I’ve actually been accused of faking/exaggerating my visual impairment because “clearly you can see if you’re a scientist, it can’t be that bad, you can’t be blind,” which comes from a fundamental misunderstanding of what deafblindness is and what visual impairment is. Similarly, deafness is for the people who say, “but we’re talking now“. I’ve experienced these prejudices in the medical field, too. I’ve been diagnosed with Cold Urticaria TWICE because “it’s so rare, you can’t have it”.


Overcoming Challenges

Despite the myriad of challenges, Max is not one to be easily deterred. Their journey is a testament to the resilience and strength of character that can be found in the face of adversity. Here are some ways Max has overcome the obstacles:

Advocacy and Awareness

Max has become an advocate for themselves and others with disabilities. They actively work towards raising awareness about the capabilities of disabled individuals and the need for more inclusive practices in the STEM industry. Educating others about their challenges and strengths breaks stereotypes and promotes understanding. As Max demonstrated when they first joined Revvity:

“You know, deaf people like me are everywhere. So when I started, I made a deaf awareness week newsletter that went out to the local site. As I was new, I didn’t want people to think that I was ignoring them. And I had so many people come up and say to me ‘I have hearing loss too’ or ‘I know someone with hearing loss and they really struggle with their confidence’. And I was able to have a discussion with them and reassure them that it’s totally normal. Hearing aids are normal. Tinted lenses are normal. Wheelchairs are normal. It’s all normal.”

Accessibility and Facilities

Max embraces cutting-edge adaptive technologies and develops personalised strategies to overcome the barriers they face. Moreover, the STEM industry often lacks adequate accessibility and accommodation for individuals with disabilities. Laboratories, research facilities, and workplaces may not be designed with the specific needs of deafblind and disabled scientists in mind. Simple tasks such as accessing laboratory equipment, conducting experiments, or interpreting data graphs become challenging without appropriate adjustments. Max collaborates with their labmates and the facilities team, who are very supportive.

Supportive Networks

Building a network of supportive mentors, peers, and colleagues plays a vital role in the success of Max. Supportive individuals who recognise their potential and provide encouragement help them navigate the challenges and keep their aspirations alive. As a Co-Lead for Revvity’s Disability Employee Resource Group, Max is able to drive positive change: 

“And I’m in an incredibly privileged position that I am a co-lead of our new Disability Employee Resource Group. So I have a voice where I can highlight inaccessibility in all walks of STEM, for example visually accessible slide decks. They’re fully on board, and full of encouragement. ‘Sounds awesome! Make it!’. So I made it.”

Perseverance and Determination

Max’s journey is fuelled by unwavering determination and perseverance. They do not allow setbacks to define their path, using each challenge as an opportunity to grow and learn. Max’s passion and drive enable Max to continue pushing boundaries and exceeding expectations. The final words rest with Max:

“Disabled people CAN. Just be open minded. Being disabled makes me a great scientist, and a great employee. Especially in STEM. We look at standard deviations all the time. You have to have a deviation before you can have a standard.  I want people to not panic when faced with a disabled person because we’re really cool, and we bring so much to everything we do. I don’t wish that I wasn’t disabled, because I wouldn’t get to do all this cool stuff on top of everything else. It’s awesome! Being a scientist is cool, but being a disabled scientist is cooler.”

You can learn more about Max and their perspective on navigating their youth as a disabled scientist at RARESummit23, where they will be accompanied by an expert Youth Panel.