BioMarin Pharmaceutical Inc.

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BioMarin is a leading, global rare disease biotechnology company focused on delivering medicines for people living with genetically defined conditions.

Read our community guidelines: http://bit.ly/3YZNeET At BioMarin, patients are at the heart of what we do. Applying our knowledge to make a transformative impact is not just a calling, but an obligation to those who will benefit most. The end goal has always been better lives and now we can reach more. And the more people we reach, the more our impact can grow. The BioMarin page is a place to connect with and learn about our company. We will provide company news and updates, as well as share stories from our patients. Our goal is to engage with our community by providing useful and interesting information, and fostering open and respectful dialogues about the diseases we seek to treat. While we are committed to fostering important relevant discussions and respect the rights of everyone to voice their opinions, we ask that users/followers of our social media channels are respectful to other members and follow our Community Guidelines. See our full Community Guidelines here: https://www.facebook.com/BioMarinOfficial/app/145740286161845

10/15/2026

Throughout Hispanic Heritage Month, BioMarin’s LatinX Employee Resource Group (ERG) brought colleagues together to celebrate culture, community and opportunities for students to explore science.

At Novato Unified School District’s Empower Tomorrow event at College of Marin, LatinX members supported hands-on biotechnology activities for eighth-grade students from Sinaloa, San Jose and Hamilton Middle Schools, with BioMarin colleagues Sergio Covarrubias and Augusto Seminario helping students learn about careers in science and engineering.

LatinX continued its community engagement with a volunteer event for the Boys & Girls Clubs of Napa Valley, where colleagues assembled STEM kits for local youth and supported the organization’s upcoming STEM Showcase.

Thank you to the LatinX ERG and all who helped make this past Hispanic Heritage Month so meaningful.

10/14/2026

For Sarita, connection is found in the simplicity of everyday moments: drawing, spending time with her dad and volunteering at a nearby nursing home. The 16-year-old from Colombia brings warmth and thoughtfulness to the people around her in quiet but meaningful ways.

Family is at the center of Sarita's world, especially her bond with her father, William. She speaks about him with pride, cherishing the moments they share together and the opportunity to show her appreciation in simple ways.

“When he comes home tired from work, I make him a cup of coffee,” she says. “I make it with a little lemon and a little bit of love, and I serve it to him so he can enjoy it.”

Sarita lives with ( ) type VI, a progressive, rare genetic condition also known as Maroteaux‑Lamy syndrome that leads to the buildup of complex carbohydrates, which can cause complications to multiple organs. The support surrounding Sarita has helped her navigate both the challenges and everyday moments of life with MPS. Her father has been a steady source of encouragement, and she fondly remembers a physician who cared for her when she was younger and helped her better understand what to expect. With that foundation behind her, Sarita has been able to approach life with confidence.

Looking ahead, Sarita hopes to work with children, helping them learn and grow while encouraging them to believe in themselves.

“I'd like to teach them how to walk, talk, paint and write,” she says. “I'd also like to teach them good manners so they can grow up to be better people.”

Sarita dreams of building a happy future with a family of her own, creating the same sense of love and support that has been such an important part of her life.

Her story is a reminder of the power of being seen for all that we are, the people we love and the kindness we show others along the way.

10/13/2026

Our team is feeling energized and grateful after a great weekend at the The American Society for Bone and Mineral Research (ASBMR) Annual Meeting, where we had the chance to connect with leading researchers and clinicians who are driving innovation for people living with skeletal conditions. This collaboration is integral to advancing our shared goal of improving outcomes for those affected by rare genetic conditions.

10/06/2026

BioMarin employees joined policymakers, patient advocates, healthcare professionals and members of the rare disease community last week at the European Parliament in Brussels for an expert briefing on newborn screening.

The session focused on how to address inequalities in newborn screening across EU member states – some of which screen for as many as 40 rare diseases at birth, while others screen for as few as two. Rachel Finnegan, who leads BioMarin’s Government Affairs work in Europe and Canada, spoke at the briefing, highlighting three main areas where the EU could enact meaningful change, including:

1. Establishing an EU expert advisory committee to help member states keep screening panels up to date as new treatments are approved

2. Recognizing evidence from national screening pilots, so that the same work does not need to be repeated across member states

3. Funding capacity building and the expansion of screening panels

We thank MEPs Billy Kelleher and Nicolas Gonzalez Casares for co-hosting this session, as well as EURORDIS-Rare Diseases Europe, EUCOPE – European Confederation of Pharmaceutical Entrepreneurs and the European Parliamentary Research Service for contributing to the meaningful discussion. This was an important dialogue ahead of an upcoming vote on the EU’s Rare Disease Action Plan, which if enacted would be a major step in the direction of greater equity in newborn screening – and for rare diseases more broadly – across the region. We’re committed to working toward a future where newborn babies throughout the EU and beyond are screened for more rare genetic conditions so that families can receive accurate diagnoses and timely connection to care.

10/01/2026

Archie is happiest when he's on a boccia court or spending time with family. At 25 years old, he lives in the west of England with his parents and younger brother, Isaac, and has built much of his life around the sport he loves. As a boccia coach, competitor and business owner, Archie spends his days helping others discover the game while continuing to pursue his own goals within the sport.

“I’m happiest playing boccia and spending time with family,” says Archie. “I’m not a big partier. I prefer nice, quiet meals out.”

Archie lives with (MPS) type IVA, also known as Morquio A syndrome, a rare genetic condition that affects the body's skeletal system and can lead to complications affecting multiple organs. Diagnosed at 2 years old, he does not remember life before MPS, but he knows that receiving a diagnosis brought his family something invaluable: answers.

“When my parents were told it was MPS, it gave them a roadmap,” Archie says. “Before that, there was so much uncertainty about what life might look like. Getting the diagnosis helped them understand how to cope and what support I might need.”

As he grew older, Archie focused his energy on the things that mattered most to him. While MPS has brought challenges, including major hip replacement surgery and increased wheelchair use, he has never let those experiences define him. Instead, he has built a successful coaching business and achieved success in boccia, competing at the National Finals.

One lesson Archie wishes more people understood is that a physical disability does not change who someone is.

“Yes, I have a physical disability, but that is all it is,” he says. “People do not need to treat me differently from anybody else.”

Throughout his journey, Archie has found support not only from his family, particularly his mother, but also from the wider MPS community. Through the MPS Society UK, here for those with rare diseases, he has connected with other people living with MPS, attended conferences and built friendships with peers who understand the realities of living with a rare disease. More recently, he became an ambassador for the organization, helping to shape its future and support others in the community.

Looking ahead, Archie hopes to help grow the sport of boccia and create more opportunities for athletes around the world. He dreams of seeing the classification of boccia in which he competes – BC5 – gain international recognition, and one day hopes to play at the Paralympic Games.

He also hopes his story can help others who are just beginning their MPS journey.

“When you have a diagnosis, it helps to have a roadmap,” Archie says. “Sharing my story is about helping other people build that roadmap and demonstrating what’s possible.”

09/30/2026

Amanda Beedle and her husband, Adam, are parents to two daughters living with CLN2 disease, an ultra-rare neurodegenerative genetic condition that belongs to a group of disorders called Batten disease. Annabelle is a gentle 10-year-old who loves the color pink and is described by her family as “an old soul," while Abigail is an energetic 6-year-old who loves cheetah print and sampling her mother’s red lipstick.

Although the sisters share the same condition, their journeys have been notably different. For Annabelle, the first signs of CLN2 presented as speech regression and seizures when she was 3 1/2 years old. She was initially misdiagnosed with a pediatric form of epilepsy, but as symptoms continued to progress, Amanda and Adam pursued genetic testing, which provided the family with an accurate diagnosis.

The family elected to have Abigail screened as well, and testing revealed that she was also living with CLN2, which historically has led to premature death by early adolescence. Amanda recalls how difficult those days were, but also notes that the clear diagnosis provided a sense of relief and a path to pursue the best possible options for Annabelle and Abigail. Particularly in Abigail’s case, knowing early enabled the family to connect her with specialized, collaborative care before any outward symptoms manifested.

“Our family lives firsthand, every single day, the profound impact that an early diagnosis and receiving care very early can have,” Amanda shares.

The Beedles are committed to sharing their story to raise awareness of CLN2, highlight the impact of early diagnosis and connection to care, and advocate for the condition to become part of newborn screening panels. CLN2 disease is not currently part of newborn screening in the United States or internationally.

Amanda says she is particularly proud of how her daughters contribute to the family’s advocacy.

“It’s been such a joy for me as a mom to see that both of my daughters have been able to partner in our advocacy efforts, and for Abigail, that she is able to own her own experience,” Amanda says. “To be able to tell others how she’s been able to be part of her care team, it speaks volumes about her ability to be able to engage with the world and make this diagnosis, however difficult, her own – and to be empowered through that.”

As draws to a close, a story like the Beedles’ is a powerful reminder about the impact of early diagnosis and why it is critical to continue pushing for the expansion of newborn screening programs around the world.

Learn more about CLN2 and other forms of Batten disease: http://ms.spr.ly/6183aYg0b

09/29/2026

Creating opportunity has shaped every chapter of Yaniris Silva’s journey – from starting her career at 17 while helping support her family, to leading BioMarin’s work in Mexico.

In our latest DNA of BioMarin profile, Yaniris shares how resilience, connection and gratitude guide her leadership and her commitment to helping ensure the company’s medicines can reach as many people living with rare genetic conditions as possible.

Read her story: http://ms.spr.ly/6184acfKo

09/25/2026

The United States Dwarf Futbol Association (USDFA) held the first competitive soccer clinic specifically designed for women and girls with dwarfism, followed by a community clinic for players of all ages and skill levels, last weekend in Chicago.

Players of all skill levels benefited from the chance to receive training from highly qualified adaptive soccer coaches, play alongside USDFA athletes, and connect with others in the community. As the official national governing body for dwarf soccer and futsal in the United States, USDFA creates competitive pathways and development opportunities for athletes with dwarfism. From drills to scrimmages, the energy on the field reflected the growing future of dwarf soccer in the United States.

A big thank you to the organizers, coaches, athletes, families and community members who made this event possible. We’re proud to support initiatives that champion accessibility and inclusion in sports – and celebrate the people helping build greater equity in the dwarfism community.

09/23/2026

Like many parents of children with rare genetic conditions, Kylie vividly remembers the moment her family’s journey changed.

Her daughter, Londyn, was just six days old when her pediatrician called during a family birthday celebration. Their doctor shared that newborn screening results indicated Londyn had a rare metabolic condition called phenylketonuria ( ), which impacts the body’s ability to break down protein.

Kylie remembers suddenly feeling uncertain about the future and recalls that what she read about PKU online only deepened her concerns. But looking back now, she recognizes how important that phone call was, because it provided critical information that enabled the family to pursue the best possible outcomes for Londyn.

They were quickly connected to specialists, guidance and resources that helped them understand PKU and start establishing the routines that would enable Londyn to successfully navigate growing up with PKU.

As we join the rare disease community in recognizing , stories like Kylie and Londyn’s underscore the meaning behind the test – and how a simple heel prick can make a lasting impact.

Learn more about London and Kylie’s journey in our video podcast series, “Why Do I Pheel This Way?”: http://ms.spr.ly/6189agWFN

09/22/2026

The Fabry community came together last week in Greensboro, North Carolina, for the National Fabry Disease Foundation (NFDF) Fabry Family Education Conference and Fabry Family Camp – two events focused on learning, connection and shared support.

During the conference, our colleagues joined individuals living with Fabry disease, families, advocates and healthcare professionals for two days of education and meaningful discussion sessions. It was a valuable opportunity to listen and learn more about the experiences and hopes among the Fabry community.

Following the conference, the Family Camp at Victory Junction gave children and families the chance to enjoy outdoor adventures, creative activities and special moments together. Our team members were honored to volunteer and connect with families, and left inspired by the resilience and support that define this community.

We’re grateful to the NFDF for creating meaningful spaces for education and connection, and to the families who welcomed us so openly.

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770 Lindaro Street
San Rafael, CA
94901

Website

http://www.biomarin.com/

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