---
title: Recent Posts | Patient Advocacy
description: Patient Advocacy |
---

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# Latest News and Blogs

![The Real Costs of Rare Disease](https://blog.congenica.com/hs-fs/hubfs/Webinar%20the%20cost%20of%20rare%20disease%20(2).png?width=320&height=192&name=Webinar%20the%20cost%20of%20rare%20disease%20(2).png)

 11/25/2022

#### [The Real Costs of Rare Disease](https://blog.congenica.com/the-real-costs-of-rare-disease)

Congenica welcomed an expert panel to discuss the true cost of rare disease, from birth to diagnosis, childhood to adulthood.

![Genomics in South Africa](https://blog.congenica.com/hs-fs/hubfs/Patient%20stories%20(2).png?width=320&height=192&name=Patient%20stories%20(2).png)

 9/1/2022

#### [Genomics in South Africa](https://blog.congenica.com/genomics-in-south-africa)

A personal view of Genomics in South Africa by Diane May, mother to Matthew who has been diagnosed with Morquio syndrome.

![Living with a rare disease in India](https://blog.congenica.com/hs-fs/hubfs/Living%20with%20a%20are%20disease%20in%20India.png?width=320&height=192&name=Living%20with%20a%20are%20disease%20in%20India.png)

 8/5/2022

#### [Living with a rare disease in India](https://blog.congenica.com/living-with-a-rare-disease-in-india)

As part of our series looking at rare diseases around the world, guest blogger Swapna Roopesh discusses living with a rare disease in India. 

![Reality Check of a 13th Birthday for a Caregiver](https://blog.congenica.com/hs-fs/hubfs/Reality%20Check%20of%20a%2013th%20Birthday%20for%20a%20Caregiver.png?width=320&height=192&name=Reality%20Check%20of%20a%2013th%20Birthday%20for%20a%20Caregiver.png)

 7/28/2022

#### [Reality Check of a 13th Birthday for a Caregiver](https://blog.congenica.com/reality-check-of-a-13th-birthday)

As part of our mental health initiative, Nicole Duaz talks about being mother to Summer, who has a rare genetic disease and autism, and a self-care coach.

![Mental health in the rare disease community](https://blog.congenica.com/hs-fs/hubfs/Having%20a%20rare%20disease%20in%20a%20family%20is%20itself%20a%20health%20inequality%20(1920%20%C3%97%201080%20px)%20(1200%20%C3%97%20644%20px).png?width=320&height=192&name=Having%20a%20rare%20disease%20in%20a%20family%20is%20itself%20a%20health%20inequality%20(1920%20%C3%97%201080%20px)%20(1200%20%C3%97%20644%20px).png)

 7/8/2022

#### [Mental health in the rare disease community](https://blog.congenica.com/mental-health-in-rare-disease-community)

Congenica and partners respond to the UK Government’s open consultation to support mental health and wellbeing  

![Friedreich's Ataxia (FA) Awareness Day](https://blog.congenica.com/hs-fs/hubfs/Untitled%20design%20(33).png?width=320&height=192&name=Untitled%20design%20(33).png)

 5/20/2022

#### [Friedreich's Ataxia (FA) Awareness Day](https://blog.congenica.com/friedreichs-ataxia-awareness-day)

In recognition of Friedreich's Ataxia (FA) Awareness Day, 21 May 2022, we welcome Alex Fielding to talk about his experience of this rare disease. 

![Unlocking sociocultural and community factors for the global adoption of genomic medicine](https://blog.congenica.com/hs-fs/hubfs/Unlocking%20sociocultural%20and%20community%20factors%20for%20the%20global%20adoption%20of%20genomic%20medicine%20(750%20%C3%97%20500%20px)%20(300%20%C3%97%20175%20px)-1.png?width=320&height=192&name=Unlocking%20sociocultural%20and%20community%20factors%20for%20the%20global%20adoption%20of%20genomic%20medicine%20(750%20%C3%97%20500%20px)%20(300%20%C3%97%20175%20px)-1.png)

 5/17/2022

#### [Unlocking sociocultural and community factors for the global adoption of genomic medicine](https://blog.congenica.com/unlocking-sociocultural-and-community-factors-for-the-global-adoption-of-genomic-medicine)

Dr Charles Steward PAE lead at Congenica talks about his latest article published in the Orphanet Journal of Rare Diseases

![Discovering Primary Ciliary Dyskinesia (PCD)](https://blog.congenica.com/hs-fs/hubfs/Discovering%20Primary%20Ciliary%20Dyskinesia%20(PCD)%20(1).png?width=320&height=192&name=Discovering%20Primary%20Ciliary%20Dyskinesia%20(PCD)%20(1).png)

 5/6/2022

#### [Discovering Primary Ciliary Dyskinesia (PCD)](https://blog.congenica.com/discovering-primary-ciliary-dyskinesia-pcd)

Fiona Copeland is mother of two boys with the same rare disease, PCD, but had to wait six years for a genetic diagnosis. Here she shares her story of discovering Primary Ciliary Dyskinesia (PCD).

![The Hong Kong Genome Project: Benefits to Patients](https://blog.congenica.com/hs-fs/hubfs/The%20Hong%20Kong%20Genome%20Project%20Benefits%20to%20Patients.png?width=320&height=192&name=The%20Hong%20Kong%20Genome%20Project%20Benefits%20to%20Patients.png)

 3/17/2022

#### [The Hong Kong Genome Project: Benefits to Patients](https://blog.congenica.com/the-hong-kong-genome-project-benefits-to-patients)

Mr. K. P. Tsang, Chairman of Rare Disease Hong Kong, talks about the benefits to patients of the Hong Kong Genome Project.

![Rare Disease Framework Action Plan for England](https://blog.congenica.com/hs-fs/hubfs/Andrea%20Haworth%2c%20Lead%20Clinical%20Scientist%2c%20Rare%20Disease%20at%20Congenica%20(1).png?width=320&height=192&name=Andrea%20Haworth%2c%20Lead%20Clinical%20Scientist%2c%20Rare%20Disease%20at%20Congenica%20(1).png)

 2/28/2022

#### [Rare Disease Framework Action Plan for England](https://blog.congenica.com/rare-disease-framework-action-plan-for-england)

Andrea Haworth, Lead Clinical Scientist Rare Disease, comments on the Rare Diseases Action Plan, launched in England to coincide with Rare Disease Day.

![Susannah’s Diagnostic Odyssey](https://blog.congenica.com/hs-fs/hubfs/Untitled%20design%20(29).png?width=320&height=192&name=Untitled%20design%20(29).png)

 2/25/2022

#### [Susannah’s Diagnostic Odyssey](https://blog.congenica.com/discovering-and-improving-the-lives-of-those-with-kif1a)

For Rare Disease Day, we interview Luke Rosen and his daughter Susannah’s physician, Wendy Chung about their journey to diagnosis of rare disease KIF1A.

![Insights into Rare Disease from the Congenica Team](https://blog.congenica.com/hs-fs/hubfs/Untitled%20design%20(27).png?width=320&height=192&name=Untitled%20design%20(27).png)

 2/24/2022

#### [Insights into Rare Disease from the Congenica Team](https://blog.congenica.com/insights-into-rare-disease-from-the-congenica-team)

We work to improve the lives of people living with rare and inherited diseases. Here, some of our team talk about what rare disease means to them.

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