While accepting a WORLDSymposium™ New Treatment Award honoring our work to support the alpha-mannosidosis community, Giacomo Chiesi, Head of #ChiesiGlobalRareDiseases, reaffirmed our commitment to deliver innovative therapies and solutions for people living with rare lysosomal storage disorders. https://b.link/fucgu6e2 #WORLDSymposia #AlphaMannosidosis #RareDiseases
Chiesi Global Rare Diseases
Pharmaceutical Manufacturing
Boston, MA 16,629 followers
We are making a rare difference.
About us
Chiesi Global Rare Diseases is a business unit of the Chiesi Group established to deliver innovative therapies and solutions for people affected by rare diseases. As a family business, Chiesi Group strives to create a world where it is common to have a therapy for all diseases and acts as a force for good, for society and the planet. The goal of the Global Rare Diseases unit is to ensure equal access so as many people as possible can experience their most fulfilling life. The unit collaborates with the rare disease community around the globe to bring voice to underserved people in the health care system.
- Website
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https://chiesirarediseases.com/
External link for Chiesi Global Rare Diseases
- Industry
- Pharmaceutical Manufacturing
- Company size
- 501-1,000 employees
- Headquarters
- Boston, MA
- Founded
- 2020
- Specialties
- Rare Disease, Hematology, Ophthalmology, Immunology, and Inborn errors of metabolism
Updates
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During WORLDSymposium™ 2024, Andrés L. Treviño Fernández had the opportunity to participate in a new program titled, “The Patient Voice: Is Anyone Listening?” to discuss our work with NAMI to help support the mental health of people living with Fabry disease. Watch this video to learn more about Andres’ presentation and other highlights from WORLDSymposium. #Fabry #RareDiseases #ChiesiGlobalRareDiseases
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Chiesi Global Rare Diseases reposted this
Funded by and developed in collaboration with Chiesi GRD. Facing childhood and adolescence with a clinical condition that requires frequent blood transfusions and hospital checkups is a challenge not only for the young patient, but also for the family as they strive to balance the natural parental inclination of protection with a desire to encourage a life lived to the full. Chiara was born and raised in Italy where she was diagnosed with beta thalassaemia major and severe anaemia, requiring regular blood transfusions that impacted her childhood experiences. Now 24 years old, Chiara has been transfusion-dependent since she was six. Read here: https://lnkd.in/eUigZiqF UK-CHI-2400145 February 2024
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Chiesi Global Rare Diseases reposted this
Funded by and developed in collaboration with Chiesi GRD. It took 18 years for Peter to receive his diagnosis of alpha mannosidosis, an ultra-rare hereditary disease caused by a deficiency in the alpha-D-mannosidase enzyme. Peter’s mother, Maria, discusses the impact her son’s condition has on the whole family. She talks about how vital their support is in caring for Peter’s everyday needs and about her specific role as a mother to a child with additional support needs. Read here: https://lnkd.in/ee8UTYTM UK-CHI-2400153 February 2024
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In a special CheckRare podcast episode, Rhonda, mother of two sons living with alpha-mannosidosis, shares the story of her family’s #RareDisease journey - from reaching an initial diagnosis to learning to manage health challenges associated with AM. Listen here: https://lnkd.in/eAbyihWu #AlphaMannosidosis #RareDiseases #ChiesiGlobalRareDiseases
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In this article, Giacomo Chiesi, Head of Chiesi Global Rare Diseases, shares highlights from our experience at WORLDSymposium 2024 – including the special recognition we received during the New Treatment Award ceremony for regulatory approvals in Fabry disease and alpha-mannosidosis last year: https://lnkd.in/eu3zu2pC #Fabry #AlphaMannosidosis #RareDiseases #ChiesiGlobalRareDiseases
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Why is it so important to manage iron overload levels for people with #Thalassemia or #SickleCell? See why: r.chiesi.com/OIW8
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Haiko and his parents embody a story defined by courage and determination. Alpha Mannosidosis is a rare disease that manifests its symptoms gradually, year after year. Every day presents an ongoing challenge navigated through relationships, mutual understanding, and love. Discover more about their story on https://itsrareforme.com/ #ItsRareForMe #ChiesiGlobalRareDisease #RareDiseases
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Chiesi Global Rare Diseases reposted this
In a world where 350M people are affected by a #raredisease, we have a societal obligation to address these issues. That’s the driving force behind Chiesi Global Rare Diseases, who we are proud to represent and celebrate during this year’s #RareDiseaseWeek. 🎉 Chiesi develops treatments for a broad spectrum of rare diseases. In doing so, they let the patient voice shape who they are, establishing partnerships across industry, patient advocacy groups, and government to best support rare disease communities. Like many of our members, Chiesi is concerned about the dire societal cost of neglecting rare diseases: current estimates are up to $8.6 trillion per year. That’s why they support long-term investments in rare disease R&D: to foster economic returns AND help patient communities live their most fulfilling lives. #OneRareVoice #LifeScience #Healthcare
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Chiesi Global Rare Diseases reposted this
Announcing Chiesi Global Rare Diseases #PharmaDay® on May 29! Join us for Chiesi’s open information session on the latest insights on their R&D strategy, target therapeutic areas, and partnering capabilities. A networking reception will follow this session in the #MassBioHub. Interested in joining us and learning more about Chiesi? Register here: https://lnkd.in/eNeMtF_A. Innovators across all stages of development with any therapeutic modality can apply for a 1:1 meeting with Chiesi’s representatives during the day. Their priority therapeutic areas are: ✔️ Hematology ✔️ Immunology ✔️ Dermatology ✔️ Ophthalmology ✔️ Endo-metabolic ✔️ Inborn errors of metabolism ✔️ Respiratory Please apply for a 1:1 by March 15: https://lnkd.in/ezCtebqe.
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