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11/16/2025

Today is World Sanfilippo Awareness Day.
We recognize the children and families affected by Sanfilippo syndrome, also known as mucopolysaccharidosis type III (MPS III)—a neurodegenerative rare disease often referred to as childhood Alzheimer’s.
Sanfilippo is caused by a single genetic defect that prevents the body from producing a vital enzyme required to break down heparan sulfate. Without this enzyme, toxic buildup damages cells, particularly in the brain, leading to severe neurological decline and loss of life in early adolescence.
At rareLife, we remain dedicated to advancing treatment development and improving outcomes for patients and families across the rare disease community.
Learn more about our work at www.rarelifesolutions.com.

11/13/2025

Attending the 2025 ISMPP Academy in Boston, MA?
Don’t miss Hugh Bartlett, CMPP, Senior Director, Solutions Development at rareLife solutions, on Friday, November 14, when he joins five other experts to discuss:
“Pharma-Agency Partnerships: Evolving Roles, Shared Goals.”
Connect with Hugh via the Whova Event App to schedule a chat! He’s eager to engage with professionals across pharma, biotech, medical communications, and publications—all united by a commitment to improving outcomes in rare disease.
Learn more about Hugh and his work at www.rarelifesolutions.com.

11/05/2025

In rare, caregivers play a critical role in all aspects of the patient journey, yet they are often overlooked. At rareLife, we do not overlook caregivers; we intentionally collaborate with them and develop meaningful partnerships to advance disease understanding.
Learn more about our work: www.rarelifesolutions.com

10/30/2025

Today, on World HPP Day, we join the global HPP community in shining a light on the often underrecognized breadth of HPP—a rare condition that extends far beyond bones and affects many aspects of daily life.
We honor the individuals and families who live with HPP every day—navigating complex symptoms, seeking diagnosis, and pushing for new understanding and care.
As part of this day, we reaffirm our dedication to working alongside patients, caregivers, clinicians, and researchers to:
*Amplify the voices of those living with HPP
*Deepen understanding of the full spectrum of the impact of HPP
*Support early diagnosis and intervention
*Advocate for access to care, research, and meaningful outcomes
Thank you to everyone in the HPP community for your commitment, your stories, and your leadership. On this World HPP Day, we see you, we stand with you, and we move forward together.
www.rarelifesolutions.com

10/26/2025

Today is —a day when people around the world unite to raise . Amyloidosis is a rare and often misdiagnosed disease caused by abnormal protein deposits in tissues and organs. If left untreated, it can lead to organ failure, most commonly affecting the heart, kidneys, liver, spleen, and nervous system.
The 2025 World Amyloidosis Day theme, Hereditary Amyloidosis, highlights the urgent need for faster symptom recognition and improved global access to diagnostic tools.
At rareLife, we honor rare patients and families and remain dedicated to advancing treatment development and improving outcomes for the rare disease community.
Learn more about our work: contactus@rarelifesolutions.com

10/25/2025

(EB) is a group of painful and debilitating rare disorders caused by mutations in genes that make the skin extremely fragile. Approximately 200 children are born with EB every year in the United States.
At rareLife, we honor rare patients and families and remain committed to leveraging our expertise in rare diseases to support treatment development and advance better outcomes.
Please join us in spreading awareness in honor of (Oct 25-31).
Learn more about our work: contactus@rarelifesolutions.com

10/14/2025

Medical affairs success starts with strategy. At rareLife, we bring expertise in rare diseases and proven experience facilitating strategic workshops that move ideas into action. Let’s partner to shape what’s next.
Reach out to learn more: contactus@rarelifesolutions.com

10/07/2025

In rare, everything is different. Your scientific communications should be, too.
At rareLife solutions, the rare disease agency, we are more than scientists, writers, strategists, and creatives. We are also rare moms, caregivers, and carriers who develop content that educates, motivates, and drives meaningful change.
Reach out to learn how we can help you: contactus@rarelifesolutions.com

10/01/2025

This month, people around the world are joining together to raise awareness of Niemann-Pick disease—a rare genetic disorder affecting approximately 1 in 150,000 births. This condition disrupts the body’s ability to process fats, leading to serious complications in the brain, liver, spleen, and lungs.
By sharing stories and increasing understanding of Niemann-Pick disease, we help bring hope, support, and progress toward new treatments—and ultimately, a cure—for patients and families everywhere.
At rareLife, we honor rare patients and families and remain committed to leveraging our expertise in rare diseases to support treatment development and advance better outcomes.
Learn more about our work: contactus@rarelifesolutions.com

09/30/2025

September 30 is !
At rareLife solutions, we proudly stand with the and the Rare Cancer Coalition to raise awareness of rare cancers. Together, we can amplify the voices of those impacted and drive greater understanding and support. 🦓
Join the zebra herd and learn how you can get involved: https://bit.ly/RCD-23

09/15/2025

World Mitochondrial Disease Week is September 15-21, 2025.
Mitochondrial diseases (mito) affect about 1 in 5000 people, making them the second most commonly diagnosed serious genetic disease after cystic fibrosis. Mito dysfunction is also linked to Alzheimer’s, Parkinson’s, diabetes, heart disease, and some cancers.
This year’s theme—“Decode the Mito Puzzle – Bridging Science and Symptoms”—goes hand in hand with our rare philosophy, highlighting the need to connect scientific discoveries with the lived experiences of patients to improve diagnosis, care, and outcomes.
At rareLife, we support people affected by mito—and all rare diseases—by leveraging our expertise to support treatment development, educate stakeholders, and advance better outcomes.
Learn more about our work: contactus@rarelifesolutions.com

09/07/2025

September 7 is World Duchenne Awareness Day (WDAD), raising awareness of Duchenne and Becker muscular dystrophy.
The 2025 theme, “Family: the heart of care,” honors the essential role families play as caregivers, advocates, and companions for those living with Duchenne.
About 1 in 5000 boys is born with Duchenne muscular dystrophy, a rare genetic disorder that weakens muscles over time, eventually affecting movement, breathing, and the heart. Becker muscular dystrophy is caused by similar genetic changes and also significantly impacts health and quality of life.
At rareLife, we honor the families at the heart of care and remain committed to leveraging our expertise in rare diseases to support treatment development and advance better outcomes. Learn more about our work: contactus@rarelifesolutions.com

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606 Post Road East, #397
Westport, CT
06880

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+18446638642

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http://rareLifesolutions.com/

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