Eurordis - Rare Disease Europe

“Anyone can help a little bit, and a little bit helps a lot. We welcome anyone that can give their time with open arms,” states Silvia Aguilera, Vice President of the Spanish Antiphospholipid Syndrome Association (SAF España). Since 2015, Silvia has been at the forefront of SAF España, managing social media and international relations, while also representing her disease in European networks and committees, including ERN ReCONNET and the European Alliance of Associations for Rheumatology’s PARE patient committee since June 2023.

Silvia’s journey in patient advocacy began after her own diagnosis of antiphospholipid syndrome. “After my diagnosis, I felt very alone,” she recalls, describing the experience as traumatic. Driven by her experience, she dedicated herself to ensuring others don’t face the same ordeal. “I volunteer so that what happened to me as a patient doesn’t happen to anyone else,” she explains.

With an engineering background, Silvia leveraged her analytical skills to research her condition, eventually considering starting a blog to share her insights. Her journey led her to SAF España, where she began applying her scientific understanding to help others navigate their diagnoses.

Silvia’s advocacy extends to her role in creating the ERN Spanish patient representatives’ group, where she serves as the ePAG coordinator, representing ReCONNET on the European stage. Despite recognising the need for more volunteers, she remains hopeful about the future.

“There’s a long, long road ahead,” Silvia acknowledges, emphasising the importance of collaboration and support among volunteers. “We need to stay together and support each other in our volunteering roles so that we can all make it to where we want to get to.”

Adéla Odrihocká, our second EURORDIS Black Pearl 2024 awardee, brings a unique blend of skills as a healthcare translator and interpreter to the forefront of patient advocacy. Her journey began at university, where she organised workshops on rare diseases, and has since seen her speaking at major European conferences on topics from gender biases to public policies.

Adela’s commitment to advocacy was sparked early on, influenced by her upbringing in a revolutionary music school project in the post-Communist Czech Republic, aimed at integrating people with disabilities. Coupled with her personal battle towards a diagnosis of Ehlers-Danlos syndrome, she developed a deep passion for patient advocacy. This passion only intensified during her university years and her volunteering stint in France, leading her to co-found an organisation for those with Ehlers-Danlos syndrome in the Czech Republic. Motivated by a desire to challenge stereotypes and foster inclusion, Adela’s volunteer work has had a significant impact both nationally and across Europe.

“I wanted to be that person who understands others,” says Adela, her enthusiasm palpable. “To be this person that other people can relate to. These human connections are extremely powerful.” Her motivation, like Silvia’s, is rooted in her desire to improve the diagnosis experience for others.

Adela also emphasises the dual benefits of volunteering, not only for those she helps but also for her own advocacy work. Learning about rare diseases, she believes, is crucial, not just medically, but in understanding the personal struggles of those living with these conditions. “I could tell them that I know what they are talking about, and I think these human connections are extremely powerful,” she asserts, highlighting the profound impact of empathy in her work.