Behind every country's FOP community is someone fighting to make sure no family faces this disease alone. The International Presidents' Council (IPC) brings together leaders from around the world; parents, patients, and advocates alike, united by a shared commitment to raising awareness, improving diagnosis, and expanding access to care and treatment for people living with FOP.
As we approach the IPC's 20th anniversary in 2027, we're excited to spotlight the global leaders who make this council so meaningful. Meet the six new IPC leaders who recently joined the group, representing communities across Latin America, Europe, and Asia.
Qusya Bashr | Malaysian Rare Disorder Society | Malaysia, Indonesia & Asia Pacific
When Qusya Bashr's youngest daughter fell off a chair at nearly 3 years old, no one imagined it would launch a year-long search for answers across five different hospitals. "Two weeks later, the left side of her body became swollen, from armpit down to her ribs," Qusya recalls.
One hospital misdiagnosed her daughter's condition as cancer, recommending a biopsy and telling the family she had only two weeks to live. Qusya declined the procedure and kept searching for answers. In April 2010, the family finally received a diagnosis: FOP. By then, her daughter's left arm was already locked, and her neck had begun to lose mobility.
Recognizing the progressive nature of FOP, she ended her career in mid-2013, leaving behind a PhD in progress and a role as a Research Officer, to focus fully on her daughter's care and education. "While leaving my professional career was not an easy choice," she shares, "it allowed me to dedicate myself fully to my daughter's journey, a decision I have never regretted."
From age 16 to 18, her daughter endured multiple flare-ups and spent much of that time bedridden. "Those were difficult years for her and for our family," Qusya says. Today, her daughter's condition is stable, and watching her prepare for her SPM examinations "fills me with pride, gratitude, and hope for what lies ahead."
Since June 2024, Qusya has served as FOP Representative and Advocate for the Malaysian Rare Disorder Society, representing patients across Malaysia, Indonesia, and the Asia Pacific region. Her advocacy has led to real, measurable change: she successfully advocated for FOP's inclusion in the Malaysian Rare Disease List under the Ministry of Health registry, contributed to the implementation of a Compassionate Use Program for FOP patients, and played a key role in facilitating a clinical trial for FOP at Hospital Kuala Lumpur in 2022.
Joining the International Presidents' Council was a natural extension of a career built on collaboration. "Serving on the International Presidents' Council provided an opportunity to collaborate with and learn from a global network of dedicated patient advocacy leaders, while advancing efforts to improve the lives of people living with FOP," she says.
Looking ahead, Qusya hopes for access to effective treatments that can slow disease progression and preserve mobility, along with expanded opportunities for people with FOP to pursue education and careers. Her goal is ensuring that when treatments do arrive in Malaysia, the policies and support systems are already in place.
"We hope that all the progress made in advocacy will come at the right time," she explains, "so that when a drug is approved to treat FOP in Malaysia, the necessary government policies, funding mechanisms and support programs will already be in place."
Connect with Qusya
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Languages Spoken: Malay, English, French, Hindi, Mandarin | ||
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Malaysian Rare Disorders Society Facebook page |  |
Malaysian Rare Disorders Society on Instagram | @officialmrds |
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Malaysian Rare Disorders Society on YouTube | @mediamrdsmalaysia | |
Qusya's personal Facebook |
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Qusya's personal Instagram | @qusya_bashr |
Pau Gutiérrez | IFOPers Latinos | Mexico, Latin America
When Pau first learned about FOP, she felt hopeless. There was no cure, no treatment; she didn't want to know anything more. That changed when she connected with FOP patients who spoke her language, from countries across Latin America. That connection sparked something: Pau started a Facebook support group, and what began as a small effort has grown into IFOPers Latinos, now connecting patients and families across the Spanish-speaking FOP community on Facebook, Instagram, YouTube, and TikTok.
"It was hard to believe that everyone felt alone in this," Pau says, "since when you get diagnosed, doctors tell you that you are the only one in the state or the country."
Today, as Administrator of IFOPers Latinos, Pau serves an estimated 60 to 70 patients across Mexico and Latin America. Being selected for the International Presidents' Council felt like an unexpected next step in a journey that has continually opened new doors. "Being part of the IPC is a huge step for me," she shares, "since I can be more involved and familiarize with more people."
Pau's hope for the future is twofold: a cure for FOP, and in the nearer term, clinical trials available in every Latin American country so patients finally have the opportunity to participate. Her goal remains simple and unwavering: talk about FOP, loudly and often, so fewer people are misdiagnosed.
"I will continue fighting and telling people about FOP," she says. "No matter if people get tired of hearing it. Since I started my support group, I know I'm their voice. I talk for those patients who can't do it, or who are afraid to be judged."
Connect with Pau
Martha Herrera Olaya | FUNCOLEHF (Colombian Foundation for Rare Diseases) | Colombia
Martha Herrera Olaya's commitment to rare disease advocacy is deeply personal. Twenty-three years ago, she lost her son to a rare disease. "That loss did not break me, it gave me purpose," she shares. "Everything I do today is in his honor and for every family that deserves better answers, better care, and more hope."
That purpose has shaped a 23-year career in rare disease advocacy and public health policy in Colombia. Martha serves as Executive Director of FUNCOLEHF (Colombian Foundation for Rare Diseases), INSPIRAT, and the Colombian Foundation for Cystic Fibrosis. A social communicator and journalist by training, she holds master's degrees in Health Policy and Management and in Rare Diseases, along with specializations in Health Economics and Management, International Project Management, Public Policy and Management, and Health Administration.
Martha's connection to FOP specifically began when she met a family whose child had been diagnosed after years of misdiagnosis. "Their story moved me deeply and made me realize how invisible this disease was, not only to the general public, but to the medical community," she recalls. "From that moment, I committed to making FOP a priority within our foundation's work."
Joining the International Presidents' Council felt like a natural extension of that commitment. "I believe that the FOP community in Latin America deserves to have a voice at the global table," Martha explains. "Colombia faces unique challenges in rare disease diagnosis and access to treatment, and I saw the IPC as the perfect platform to share our experiences, learn from others, and work together toward real change for FOP families."
Her goals are clear and ambitious: identify and register all FOP patients in Colombia who remain undiagnosed, train Colombian physicians to recognize FOP early, secure access to emerging treatments through INVIMA, and ensure every Colombian FOP family knows they're part of a global community fighting for them. "I am hopeful that the day is coming when a child in Colombia diagnosed with FOP will have a clear pathway," Martha says, "a doctor who knows what FOP is, a treatment that works, and a community that supports them from day one."
"I believe no family should face FOP in isolation," she adds. "That is what drives everything I do."
Connect with Martha
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Languages Spoken: Spanish | ||
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FUNCOLEHF on Facebook | |
FUNCOLEHF on Instagram | @funcolehf |
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FUNCOLEHF on Twitter | |
FUNCOLEHF on YouTube | @funcolehf |
José Maldonado | FOP Chile | Chile
José Maldonado is the father of Isabella, diagnosed with FOP at age 2 and now 5 years old. For nearly two years, José has served as President of the Asociación Fibrodisplasia Osificante Progresiva Chile (FOP Chile), representing 16 patients and families across the country.
"Being president of the FOP Chile Association has become my life's purpose," José shares, "not just fighting for my daughter, but for all our patients and their families in Chile." His professional background has allowed him to connect with major federations, doctors, scientists, and politicians throughout Chile, raising awareness and understanding of FOP at a national level.
Joining the International Presidents' Council offered José something he'd been seeking: a direct line to other leaders who have long been part of the global FOP community. "To have a direct connection with members of other organizations who have been involved in FOP for years, to learn from them, and of course to contribute to the global FOP community," he says of what drew him to the role.
José's hope for the future is rooted in gratitude for those who came before him. "I believe the contribution of the FOP community worldwide is incredible," he says. "All the progress made in treatments, discoveries, and studies gives us confidence in a promising future for our patients." His goals are focused and personal: improve quality of life for every patient in Chile, empower and educate families on care and medical advancements, and fight for access to future treatments.
"My success is focused entirely on the well-being of our patients," José says. "I want to thank the entire FOP community, IFOPA, and our patients who left a legacy. A path already laid out to follow with faith, confidence, and the certainty that this path will lead us to our goal: finding a cure for FOP."
Connect with José
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Languages Spoken: Spanish |
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FOP Chile on Instagram | @fopchile |
Elena Pomana | Dăruiește Fericire Association | Romania
For Elena Pomana, living with FOP has never been just about the diagnosis; it's been about finding her voice in a world that often sees the condition before the person. "My journey has not been just about living with FOP, but about finding my voice in a world that often sees the diagnosis before the person," she shares. "Today, this life experience guides my work in advocacy, education, and writing."
That voice has taken many forms. Elena is the founder of the Dăruiește Fericire Association, an author and storyteller behind the memoir 1 in 2 Million: Between the Silence of God and the Noise of the World, and the creator of both the "Poppy oferă curaj" children's campaign and the "Voci Curajoase" advocacy platform. She serves as the FOP Ambassador for Romania and an Ambassador of the Romanian Diversity Charter, and her work has been recognized with the Romanian PR Award Diploma of Excellence (2025), along with the Best Vulnerable Community Inclusion Initiative and Community Transformation Awards (2025).
For Elena, joining the International Presidents' Council meant turning local advocacy into global impact. "I believe that real progress for the FOP community depends on close collaboration between patients, families, community leaders, researchers, and organizations worldwide, and the IPC provides the exact space where this collaboration can drive real impact," she explains.
Her advocacy is rooted in a simple belief: a diagnosis should never overshadow the person behind it. "I advocate for the FOP community because a safe treatment is not just a wish, but an urgency we must all support," Elena says. "Through advocacy and real storytelling, I turn powerlessness into action, bringing hope, courage, and what I call the art of giving happiness to our community."
Looking ahead, Elena hopes to drive structural change in Romania, ensuring FOP is properly coded within the National Registry of Rare Diseases and building a network of informed specialists who can guarantee early diagnosis. Her goals are concrete: official recognition of FOP within national health registries, a targeted awareness initiative for neonatologists and specialists, and Romania's first regional FOP meeting in collaboration with the IFOPA team.
Connect with Elena
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Languages Spoken: Romanian, English (written communication) | ||
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Associatia Daruieste Fericire Facebook page |  |
Associatia Daruieste Fericire on LinkedIn |
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Elena's personal Facebook | |
Elena's personal LinkedIn profile |
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Elena's personal Instagram | @elena_pomana |
Maria Tsigkou | 95 Rare Alliance Greece | Greece
When Maria Tsigkou was first diagnosed with FOP, she was the only known patient in Greece. "There was no other patient in my country and I felt very alone and unique, but in a negative way," she shares. Attending FOP meetings changed that. "It gave me the opportunity to meet people who truly speak the same language and walk in the same shoes, making me feel understood and less alone."
That sense of connection has fueled Maria's advocacy work ever since. In Greece, there is no specialist for FOP, and the healthcare system still struggles to meet the needs of people living with rare diseases. "There is often a long diagnostic odyssey," Maria explains, "and even after receiving a diagnosis, there are no well-established support systems to help guide patients and their families." Through her advocacy work over the past few years, she has seen these gaps firsthand and is determined to help close them.
Professionally, Maria is a pharmacist currently working as an Assistant Project Manager at a biotechnology park. This autumn, she'll begin an MBA in Healthcare Management. She has participated in both European and national training programs, including EUPATI, work she says has "helped me grow, given me valuable knowledge, and motivated me to become even more active in representing and supporting the rare disease community."
Living with FOP has meant navigating unpredictable flare-ups and shifting symptoms. "They don't just affect your body; they change how you see yourself," Maria says. "As you lose mobility, you also lose some of the things you used to do, and in a way, a part of who you were. You have to adapt, discover new ways of living, and get to know a new version of yourself."
Maria's hope for the future centers on shortening the path to diagnosis and better preparing healthcare professionals to recognize FOP, understand available treatment options, and know where to refer patients for expert care. She also hopes every patient can access reliable information and support so they feel empowered to make informed decisions. "When informed healthcare professionals and empowered patients work together," she says, "we can make a real difference."
Outside of her advocacy work, Maria is a disabled person and rare disease advocate who loves her pets, enjoys traveling, and is always looking for opportunities to learn, grow, and challenge herself.
Connect with Maria
Inspired by Their Impact
Six leaders, six countries, one shared mission: making sure no family faces FOP alone. As we look ahead to the IPC's 20th anniversary in 2027, we're grateful for the dedication of these leaders and inspired by the impact they continue to make in their communities. We look forward to continuing to spotlight the voices and stories of IPC leaders from around the world in the months and years ahead.
