[Lara] sets the table for all to have a voice, but keeps our eyes on the right prize: education and research to enhance the lives of patients and their families impacted by EDS.
Patient empowerment is the light needed for so many with chronic disorders, invisible to the eyes of many practitioners. Professor Bloom, Lara's energy and accomplishments helps young and old to rise up and navigate the bureaucratic, uncaring health care systems, which are riddled with implicit bias.Professor Bloom has taken her experiences to not only provide medicine to those still suffering with complications of EDS, but to coordinate efforts, across countries and oceans.With a microphone in one hand and salty chips + water in the other, Lara transforms her energy to raise awareness, of this not so uncommon disorder, but to coordinate thought leaders from different clinical specialties as well as patient advocates. We are charged to educate our peers and put forth better diagnostic protocols and therapeutic remedies for EDS and syndromes that travel with EDS.It must be like herding cats, but with "sasha fierce passion", keen insights and timely humor, she sets the table for all to have a voice, but keeps our eyes on the right prize: education and research to enhance the lives of patients and their families impacted by EDS.It has been an honor to work with Prof. Bloom at EDS conferences, the ECHo projects, and the grant. When the world opens up again, I look forward to sharing tales, great ideas and then toasting her efforts on mission, well done.Enthusiastically submitted, Anne Maitland.
[Lara] is inspirational and fearless in her attitude & is a great advocate for Patient Leadership.
It was my great pleasure to meet Lara as a fellow #IAmNumber17 #Changemaker in the Takeda campaign to raise awareness of rare conditions.Lara’s passion for patient involvement & collaboration in their own care and in the Health & Care system is incredible. She is inspirational and fearless in her attitude & is a great advocate for Patient Leadership.
Thank you Lara for all that you do for the rare disease community!!
I have enjoyed every moment of working with Lara. Lara's commitment to people's health and happiness is what makes our collaboration so enjoyable. Lara brings an honest and thoughtful approach to the work and provides strategic advise that has elevated the impact of our work. Thank you Lara for all that you do for the rare disease community!! Glad to be working with you.
Lara is a true professional patient advocacy expert.
Lara is a true professional patient advocacy expert. I have known Lara for 5 years now and over that time she has been inspirational to us all at IMI in helping us forge our own patient involvement strategy. She is an accomplished public speaker and through her own personal experience brings credibility to everything she does.I recommend Lara without reservation. And thank you Lara for all you do in bringing the voice of patients around the world to the fore.
Lara is a phenomenal advocate for anyone suffering from or challenged by illness and disease.Her leadership of the Ehlers-Danlos Society has propelled the foundation forward to explore exciting new avenues in support and research.She is a dynamic and visionary leader. I find her presence and the way she shows up in the world inspiring. Our world of advocacy and activism is fortunate to have such a powerful woman leader.
Lara's ability to contextualize the patient journey and ensure their voice is not forgotten is admirable.
Lara's ability to contextualize the patient journey and ensure their voice is not forgotten is admirable. Working with Lara over the years, driving positive change for rare disease patients across the globe, has always been insightful and I am continuously encouraged by her work.
My mom and I met you years and years ago at an airport Starbucks! You told her about EDS because of the way 12 year old me's thumb bent almost all the way backward to pick up my coffee.I know you probably don't remember me, I barely did till my mom reminded me, but I just wanted to say thank you. I would probably have never known why I had these issues without you. You made everything make sense, and you made my family realize I wasn't making things up for attention. Thank you. From the bottom of my heart.
Seeing the continuous work and effort she is putting in to making the rare less rare is quite incredible
I stumbled across Lara's name when I first joined an eds Facebook group. Seeing the continuous work and effort she is putting in to making the rare less rare is quite incredible. Having medical /health 'issues' herself ( I hate that word, but can't think of another) she is an inspiration. I'm not able to travel the world to spread the stripey word, but I do share to those I meet about the rare condition. Thanks as well for being real, you share the good and the bad, but also ways to look after ourselves.
Thanks for all the work you have done to raise awareness for EDS.
I am constantly blown away by what you do and how you do it
You have encouraged, inspired and supported me over the 10+ years. I am constantly blown away by what you do and how you do it.
Your work has enabled me to provide accurate information to my local GP to ensure I receive accurate, appropriate treatments, referrals and physio to enable me to live my best life - I can honestly say I would have deteriorated much more than now without having met you and been able to access your work and support systems, you are one of the main architects of my health support.
Your positivity and drive have inspired me to not give up
Thank you for all you do for the EDS Community world wide. I was diagnosed with EDS and POTS a year ago. Your positivity and drive have inspired me to not give up despite the pain. Thank you for everything!
I hope to be able to meet you one day to thank you in person.
Lara, I just wanted to say that knowing you are out there every day fighting on behalf of all zebras around the globe, myself included, makes me feel a little safer and certainly hopeful. As you know, EDS can be a scary and isolating condition, but you and the EDS society have given all us zebras a way to connect to one another and feel part of a community, some of us for the first time in our lives. I hope to be able to meet you one day to thank you in person.
I was always confident that Lara would get the job done
I worked with Lara in my role at Genetic Alliance UK. She was always approachable, helpful and knowledgeable about all aspects of Ehlers-Danlos and when working together I was always confident that Lara would get the job done.