Globalgenes.org

Quantile Health Raises $6 Million to Transform Patient Access to …

WEBQuantile Health, co-founded by MIT Professor Andrew Lo with the aim of solving the problem of patient access to transformative treatments with an innovative …

Actived: 3 days ago

URL: https://globalgenes.org/raredaily/quantile-health-raises-6-million-to-transform-patient-access-to-gene-therapies/

RARE Health Equity Report: Building a More Inclusive Rare Disease

WEBThe report draws from the key sessions and discussions from the 2022 RARE Health Equity Summit in Atlanta, part of our ongoing efforts to better understand and …

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Mental Health in Rare Disease: Taking Care of Your Mind Is Taking …

WEBTaking care of your mental health is key, whether you are the patient or caregiver. Anxiety, stress and depression can all manifest as physical symptoms, including elevated blood …

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Depression and Anxiety: Understanding the Signs and Symptoms …

WEBPain, fatigue, weakness, and disease symptoms can cause depression. Juggling multiple appointments. Coping with unpredictability of the disease. Taking …

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Top 10 Takeaways from the 2023 RARE Health Equity Forum

WEBHere are the top 10 things that the Global Genes team learned during this year’s RARE Health Equity Forum: 10. We started with deep listening. We stopped, and …

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RARE Health Equity Summit 2022

WEBThis event provided attendees with strategic insights and tools to empower and equip them to address racial, ethnic, gender, socioeconomic, and other disparities. The outcomes of …

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App Helps Rare Disease Patients Find Others with the Same …

WEBIt is designed for people age 13 and older. Patients and caregivers can use the RareGuru app to connect with other users that have the same conditions, are …

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Top Tips for Newly Diagnosed with a RARE Disease

WEBEnsure you have local support in your immediate vicinity. Individual and Childcare Approach: Always shower your affected child (and any siblings) with love and …

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NYT: Parents of Children With Rare Diseases Find Hope in For …

WEBNicole Boice, who founded Global Genes, one of the leading rare-disease patient advocacy organizations, said even small investments can have meaningful …

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Mental Health Impact Grant

WEBThe RARE Mental Health Impact grant provides an opportunity for patient advocacy group leaders to improve the health and mental well-being of the rare disease …

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Merck Moves into Rare Disease with $11.5 Billion Acquisition of

WEBSeptember 30, 2021. Merck took a significant step into the rare disease space, agreeing to pay $11.5 billion to acquire Acceleron Pharma, which is focused on pulmonary and rare …

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RARE Patient Impact Grant Opportunities

WEBRARE Mental Health Impact Grant. An opportunity for patient advocacy leaders to improve the health and mental well-being of the rare disease …

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Actress Mary McDonnell gives Voice to Awareness of

WEBJuly 14, 2015. Academy Award nominated actress, Mary McDonnell, has lent her voice to a new documentary film depicting life with the rare disorder Menkes Disease. Boys with …

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2024 RARE Advocacy Summit

WEBEach year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and …

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