Globalgenes.org

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 …

Actived: 8 days ago

URL: https://globalgenes.org/blog/top-tips-for-newly-diagnosed-with-a-rare-disease/

Getting Help & Finding the Right Fit: Available Emotional and …

WEBHaving a chronic and rare disease is a challenging experience, so it is understandable that mental health challenges may occur within the rare disease …

Category: Health Go Health

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 …

Category: Health Go Health

Mental Health Resources for the Rare Disease Community

WEBMarch 29, 2024. Those in the rare disease community may experience a variety of mental health issues, ranging from anxiety and stress to depression. The one thing that is the …

Category: Health Go Health

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 …

Category: Health Go Health

Rady Launches Program to Advance Newborn Screening for …

WEBJune 14, 2022. Rady Children’s Institute for Genomic Medicine has launched a program to advance and evaluate the scalability of a diagnostic and precision medicine guidance …

Category: Medicine Go Health

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 …

Category: Health Go Health

The Economic Burden of Rare Disease -- The 2023 NEXT Report

WEBThe Economic Burden of Rare Disease — The 2023 NEXT Report. June 28, 2023. Separate studies conducted by EveryLife Foundation and Chiesi Global Rare Diseases …

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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 …

Category: Health Go Health

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 …

Category: Health Go Health

RARE Patient Impact Grant Opportunities

WEBOver the past decade, Global Genes’ RARE Impact Grant Program has provided grants to rare disease patient advocacy organizations that are part of the Global Advocacy …

Category: Health Go Health

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 …

Category: Health Go Health

2024 RARE Mental Health Grant Recipients Announced

WEBMay 7, 2024. Global Genes is pleased to announce the rare disease patient advocacy organizations receiving 2024 RARE Mental Health Impact Grants. These grants provide …

Category: Health Go Health

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 …

Category: Health Go Health

2023 RARE Health Equity Forum

WEB2023 Recap. By the Numbers: 2023 RARE Health Equity Forum. The RARE Health Equity Forum convenes stakeholders in the rare disease space to identify ways to better serve …

Category: Health Go Health