I first became aware of the disconnect between the leadership of the Ehlers-Danlos Society and its members when I experienced firsthand how ignored and dismissed we, as a community, felt under the current leadership of Lara Bloom. Ehlers-Danlos Syndrome (EDS) is a complex condition that requires genuine understanding and compassion from those at the helm of our advocacy groups. Sadly, rather than being heard and supported, we are often labeled as “negative” when we voice our concerns or experiences.

Lara Bloom has shown a troubling pattern of dismissing the voices of disabled-bodied EDS patients. Her refusal to engage with constructive criticism or to acknowledge the legitimate grievances of our community compromises the trust and efficacy of the society. Patients and their families rely heavily on the EDS Society not only for guidance and resources but for compassionate understanding. Labeling dedicated community members as "negative" stifles dialogue and disrupts our community’s quest for progress and empathy-based support.

Every day, EDS patients battle with chronic pain, fatigue, and a host of medical challenges, striving for validation and better treatment options. The EDS Society should be our ally in this fight, amplifying our voices rather than silencing them. Leadership should involve accountable, empathetic individuals who prioritize patient experiences and incorporate feedback to genuinely advance the cause. It's critical that the voices of those with lived EDS experience are represented and respected.

Research indicates that inclusive and patient-centered approaches result in better health outcomes and community wellbeing. In order to achieve these outcomes, it’s crucial to have leadership that truly represents and respects the lived experiences of all EDS patients.

We call for the resignation of Lara Bloom from her position within the EDS Society. We also urge the Society to foster a culture of empathy by appointing a leader who truly listens to and advocates for our community. It is time for a change that ensures all voices are valued especially those living with EDS every day.

Unfortunately if Bloom leaves we will probably still be struggling with the same issues as this is bigger than her and involves the entire organization. The EDS community feels misrepresented and invisible to an organization that is supposedly working for them. In the past when the EDS community has spoke out they’ve left with nothing because the organization is so much more powerful than us. If they’re willing to ignore and gaslight us in public what’s happening that we don’t see?

Join me in advocating for leadership that empowers, respects, and genuinely represents us. Please sign this petition to demand accountability and positive change within the Ehlers-Danlos Society.