Guest posts

COVID-19 and it’s Impact on the Rare Disease Community: Insight

COVID-19 and it’s Impact on the Rare Disease Community: Insight

The COVID-19 pandemic has altered the lives of just about everyone, especially patients in receiving continued treatment and care. But what does it mean for patients who already have trouble accessing therapies or with finding and engaging with others like them? Cambridge Rare Disease Network provides insight.

Medics 4 Rare Diseases Red Flag Survey

Medics 4 Rare Diseases Red Flag Survey

Medics4RareDiseases are excited to announce the launch of their new research project: The M4RD Red Flags Survey.   The purpose of the survey is to find out what different rare diseases have in common during the time before diagnosis, a period often called ‘the...

DNA Digest – reflecting on the CRDN Summit 2017

DNA Digest – reflecting on the CRDN Summit 2017

Rare diseases are rare but rare disease patients are numerous.  DNA Digest said "One of the most impressive parts of the program was patients presenting their posters. Each person was suggested to share three wishes with the audience, regarding the future care of...

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