BioMarin Pharmaceutical Inc.

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BioMarin Pharmaceutical Inc.

At BioMarin, we are committed to transforming lives through genetic discovery. 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

11/21/2025

Known for her humor, optimism and big personality, Lilah lights up every space she enters. She loves reading graphic novels, writing, hula hooping, and dancing tap, ballet, and jazz.

“She always looks on the bright side,” says her mom, Kimber. “She’s the kind of kid who finds the silver lining in everything.”

Starting when Lilah was an infant, Kimber sensed her young daughter was struggling with something.

“She had a painful cry,” she remembers. “Her joints would pop, and we were constantly in and out of appointments.”

After months of tests and referrals, Lilah was diagnosed with mucopolysaccharidosis type VI (MPS VI), also known as Maroteaux-Lamy syndrome. The news was devastating, but it finally brought clarity regarding the prognosis and standard of care for the progressive condition caused by a genetic variant that leads to buildup of complex carbohydrates called GAGs.

“We finally had a name for what was happening,” Kimber said. “And we finally felt like we could do something about it.”

As Lilah and Kimber traveled for ongoing care, their resilience grew, buoyed by support from their community. In 2019, when Lilah wanted to attend the National MPS Society conference at Disney World, she had an idea: “We could have a lemonade stand!”

Lilah’s Lemonade quickly became more than a neighborhood stand. Each summer it returned, raising funds so other families could attend National MPS Society events and connect with the community. Since 2019, the stand has raised more than $25,000. Lilah and Kimber share uplifting messages about the progress of the stand on a page called Lilah’s Lemonade.

“It’s incredible what one little idea can do,” Kimber said. “Lilah just wanted to help – and she did. She continues to remind us that good things can come from hard times.”

Lilah recently marked the 10th anniversary of her diagnosis, an emotional milestone that led her family to reflect on this journey.

“I expected it to be difficult, stressful and taxing, but I didn’t expect it to be so full of love, so rewarding and so beautiful,” Kimber says. “Our journey has brought incredible people into our life and taught me so many lessons as a parent. We have this beautiful connection – Lilah can tell me what she needs and how she’s feeling before she even says anything.”

Today, Lilah cherishes time with her siblings and cousins, and looks forward to the annual National MPS Society conference, where she gets to see her friend Savannah, another young girl with MPS VI who lives in Texas. Their cross-country connection reminds her she’s never alone.

“We're just really grateful for the support in the community,” Kimber reflected. “You just can't put a value on that.”

Read more about Lilah’s story on the National MPS Society website: http://ms.spr.ly/6188tTS5i

11/20/2025

Raegan is an energetic 11-year-old living with , who is at her happiest when spending time with family and being active with friends.

That made Camp Ellellbee – an adaptive camp for people living with genetic skeletal conditions – the perfect place for Raegan and her family to have fun together while connecting with others who understand their journey and learning from each other’s lived experiences.

Hear from Raegan’s mom, Raechel, to learn more about her family and what made Camp Ellellbee a significant and memorable step in the family’s journey.

Learn more about Raechel and Raegan’s camp experiences at http://ms.spr.ly/6188tr4ho

11/19/2025

Entering her sophomore year, Allyson Chan, is excited to continue her pursuit of a politics degree at Occidental College in Los Angeles. Allyson, who is living with mucopolysaccharidosis type IVA ( IVA, or Morquio A syndrome), writes for the school newspaper and recently completed an internship with the Santa Clara County Superior Court that has renewed her ambition to attend law school.

Learn more about Allyson and the 2025-26 RARE Scholars: https://bit.ly/4nPBOz0

11/18/2025

A study published in Molecular Genetics & Genomic Medicine, co-authored by our colleagues Stacie Cavallaro and Margaret Cho, sheds new light on the experiences of people living with and their families.

The study found that many families wait months or see multiple specialists before receiving an accurate diagnosis due to limited familiarity with the condition. It also showed that hypochondroplasia affects more than growth, with many participants reporting learning differences, developmental delays and emotional challenges that shape daily life. Families shared that these challenges often leave them searching for better information, guidance and community support.

Thank you to Dr. Andrew Dauber, Chandler Crews and Renata Pekala for your collaboration on this important work. By learning from the community, we can help improve understanding, diagnosis and support for people with rare skeletal conditions. Learn more about the study: https://bit.ly/4pe6bzk

11/17/2025

When Kristen DeAndrade initially imagined what a camp for people living with skeletal conditions and their families might look like, as someone who had little experience with camps, she wasn’t sure how it would all come together. But the Founder and President of The Little Legs Big Heart Foundation had a clear vision for the objectives of bringing the community together in such a setting.

“I wanted it to be a home away from home – a place where people could make those connections that truly matter, have the hard conversations, where kids could form bonds with other kids, teens, their camp counselors,” Kristen says of what would become Camp Ellellbee. “And honestly, it has exceeded my expectations.”

Held for the first time throughout this fall, Camp Ellellbee has brought together more than 60 families from the U.S. dwarfism community for weekends filled with traditional camp activities, laughter and connections meant to broaden support networks and encourage open dialogue about living with genetic skeletal conditions.

Hear from Kristen and others who attended and supported Camp Ellellbee to learn what the experience meant to them.

Learn more about the camp at https://bit.ly/4o4mNsu

11/14/2025

Will McClintock’s time is spent divided between his computer science studies at the University of Washington, an internship with flok and a part-time job. The third-year college student is constantly managing his limited protein intake, a long-term need for many people living with . But that hasn’t stopped him from adding even more to his plate, as he’s been finding new ways to connect with the PKU community – such as attending flok Family Camp West for the first time over the summer – while also renovating a room in his fraternity to serve as a music studio.

Learn more about Will and the 2025-26 RARE Scholars: https://bit.ly/4nPBOz0

11/12/2025

Our colleagues in São Paulo, Brazil recently hosted their annual BioMarin Day, a celebration of the collective impact we strive to make for people living with rare genetic conditions. The event brought together employees, family members and other guests for a day filled with learning, creativity and connection.

This year’s BioMarin Day featured activities designed to spark curiosity and joy in people of all ages, including hands-on wildlife education, science shows, escape rooms and storytelling. Congratulations to our colleagues in Brazil for an engaging event that showcased our culture and brought our fourth operating principle – “Have fun” – to life. Parabéns!

11/11/2025

This past weekend, BioMarin employees joined members of our Veterans Employee Resource Group (VERG) and People with Disabilities Employee Resource Group (PwD) for the Bionic 5K + 1 Mile at Kezar Stadium in San Francisco.

Hosted by Bionic.Project, this event united runners of all abilities, including those using prosthetics and adaptive equipment, to showcase the power of inclusive design and technology.

As we recognize , we’re proud to stand alongside VERG and PwD in supporting The Bionic Project in its mission to create a more inclusive world for everyone, regardless of physical ability.

Thank you to everyone who participated, volunteered and cheered us on!

11/08/2025

Today we’re proud to highlight the work our LatinX Employee Resource Group (ERG) is doing to support STEM education in our community. Through an ongoing partnership with College of Marin, many of our colleagues have been actively engaged with the Mathematics, Engineering, Science Achievement (MESA) Program at the community college located near our Northern California sites. BioMarin employees have been participating in career panels, giving science talks and volunteering at local science fairs.

In addition to volunteering, LatinX helped fund MESA’s “Ramp-Up-to-Research” initiative and provide travel support for students attending this year’s SACNAS Advancing Hispanics/Chicanos & Native Americans in Science conference.

This , we thank all of our team members contributing to this initiative for helping to empower students on their STEM journeys.

11/06/2025

Dana is driven to become a passionate advocate for awareness, connection and hope within the MPS community. She shares her story with families and newly diagnosed individuals, helping them find their voices and navigate life with resilience.

“I feel like I was born to advocate and help others,” Dana says. “My goal is to reach out and inspire parents and their children who have been diagnosed with challenging conditions.”

Growing up in Philadelphia, Dana and her parents recognized from an early age that she was developing differently from other kids. When she wasn’t walking at 18 months old, doctors diagnosed her with hip dysplasia, and later with spondyloepiphyseal dysplasia. By age 11, she had undergone a bilateral hip replacement, followed by a spinal fusion at 15.

Decades later, at age 37, sudden blurring of her vision presented a new challenge, which was the piece to the puzzle that finally prompted genetic testing. That test revealed the true cause of the skeletal issues she had faced since childhood: mucopolysaccharidosis (MPS) type IVA, also known as Morquio A syndrome.

“It kind of all makes sense, even looking back to little things such as getting multiple tubes placed into my ears, or dental issues that I had,” she recalls.

Though the news was daunting, it also brought clarity and connection. After discovering the National MPS Society and the organization's Pathways Program online, Dana was soon contacted by a member of the team who visited her home, helped her understand what to expect and introduced her to others living with MPS.

“That visit eased so much of my anxiety,” she recalls.

For years, Dana built a career in health insurance and public health, using her own medical experiences to help others navigate the system. When vision loss forced her to step back from full-time work, she found a new purpose: advocacy.

Now in her late thirties, Dana focuses on staying active, connecting with her MPS community and helping others.

“Every time I come to the MPS conferences, it makes me realize how lucky I am and how grateful I am to be able to do the things that I've done for so long,” she says.

Read more about Dana’s story on the National MPS Society website: https://bit.ly/3LNXVHS

11/05/2025

Chieze Ibeneche-Nnewihe was honored with the Trailblazer Award at last week’s WOCIP is now OneWe Reach annual conference in North Carolina. The award is given annually and recognizes women of color in pharma and life sciences who actively support the professional advancement of others aligned with OneWe Reach’s vision that genuine health and wellbeing are attainable for all.

Chieze, who is Senior Director of Business Development and Corporate Strategy at BioMarin, also moderated a panel discussion titled “Driving Change in Commanding Your Seat,” focusing on effective ways professionals can own their career development and create lasting pathways for inclusive leadership across the pharma industry. The session showcased personal experiences, provided practical advice and emphasized the significance of diversity in leadership positions.

We applaud Chieze for the important contributions that led to her recognition and thank OneWe Reach for recognizing outstanding women of color across our industry.

11/04/2025

Alexa Breske splits her time between clinical rotations and coursework as she works toward earning her Doctor of Pharmacy degree from the University of Minnesota Duluth in the spring. Growing up with informed her educational and career trajectories, shaping her strong desire to be an advocate for people like herself who live with rare genetic conditions.

Learn more about Alexa and the 2025-26 RARE Scholars: https://bit.ly/4nPBOz0

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770 Lindaro Street
San Rafael, CA
94901

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http://www.biomarin.com/

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