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California Rare Disease Access Coalition

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California Rare Disease Access Coalition

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Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from California Rare Disease Access Coalition, Medical and health, 1517 L St, Sacramento, CA.

10/31/2026

Happy Halloween!! 🦇 We hope you have a ghoulishly fun holiday! 🕷️🕸️

10/23/2026

After decades of living with pulmonary hypertension and receiving a lifesaving transplant, one artist reflects on how her rare disease has influenced the stories she tells through her work. Read more:

Reflecting on the art she's created over the years, columnist Anna Jeter recognizes how her grief has snuck into her work.

10/22/2026

New Medicaid requirements are coming in 2027, but people with serious or complex conditions may qualify for an exemption based on medical frailty.

New guidance outlines how states can determine eligibility, including through tiered systems and self-attestation. The RARE Foundation breaks down what this could mean for rare disease patients and families.

Learn more:

How will this impact rare patients? CMS recently shared guidance clarifying the process states must go through to build their list of medically complex and life-threatening conditions that may qualify…

10/22/2026

Even with advances in genome sequencing, many rare disease patients remain undiagnosed. Researchers are exploring how blood protein analysis could help uncover answers and shorten the diagnostic journey.

Researchers from Queen Mary University of London, the Berlin Institute of Health at Charité (BIH) and Genomics England have shown that measuring proteins in the blood can provide important additional clues about the effects of genetic variants, helping to identify diagnoses and potential new diseas...

10/20/2026

For years, families affected by Sanfilippo syndrome have faced a diagnosis with few options and no approved treatments. A newly approved gene therapy is changing that reality and bringing new hope to the rare disease community.

The FDA approved a new gene therapy for Sanfilippo syndrome type A, an ultra-rare disease sometimes known as childhood Alzheimer’s.

10/16/2026

A promising gene therapy could help slow vision loss caused by Batten disease, but access remains out of reach. This story highlights both the promise of rare disease research and the barriers that can stand between patients and treatment.

A well-connected family’s fight to access a potential treatment for their son highlights the barriers most rare disease patients struggle to overcome.

10/14/2026

Awareness leads to understanding, support, and earlier access to care. During National Gaucher Disease Awareness Month, we're proud to stand with the Gaucher Community Alliance in elevating the voices of those impacted by Gaucher disease. Learn more: www.gauchercommunity.org

10/12/2026

Receiving a rare disease diagnosis can feel overwhelming, but families don't have to navigate the journey alone. This guide highlights resources, support networks, and practical steps to help families advocate for their child's care:

Is your child diagnosed with a rare disease? Learn how to navigate the diagnostic odyssey, find top geneticists, access clinical trials and manage care.

10/09/2026

After weeks of unexplained symptoms, a 12-year-old boy was diagnosed with Kawasaki disease, a rare disease that can cause lasting heart damage if not treated quickly. Today, his family is sharing their story to help others recognize the signs. Learn more:

Rowan Lowry, 12, has faced challenges far beyond what most children experience. His family is bringing awareness to Kawasaki disease and its impacts on Rowan.

10/07/2026

Only 31 cases of SMA-PME have been diagnosed worldwide — and three of them are siblings from the same family. Read how the Vehling family is turning unimaginable challenges into hope for future treatments and research.

A Cedars-Sinai Guerin Children’s doctor is researching a rare, life-threatening pediatric disease affecting multiple children in a local family.

Address

1517 L St
Sacramento, CA
95814

Telephone

+19165727771

Website

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