Global Genes Celebrating 10 Years

10 years of rare disease support – Global Genes

It would be wrong to let 2018 pass without celebrating 10 years of the US-based not-for-profit, rare disease patient advocacy organisation, Global Genes.

Global Genes grew out of an organisation founded in 2008 by Nicole Boice, the Children’s Rare Disease Network. The catalyst was a boy with Joubert Syndrome, whose long path to diagnosis and treatment is so characteristic of rare diseases.

Today, Global Genes’ mission is to eliminate the challenges of rare disease through its community of patients, caregivers, and clinical partners.

Smart sponsorship strategy

Following on, each patient group has its own governance and views on whether to work with pharma. Over the years, Global Genes has been highly successful at gaining pharma support for specific deliverables on its site.

For example, their Toolkit `5 Essential Tips for Effective Fundraising’ has 12 pharma sponsors. Getting pharma companies to co-operate on support in this way is in itself quite an achievement. Looking across the site, pharma support is transparently credited for many elements that help rare disease patient groups to build their capabilities, confidence and skills.

From starting a charity to sophisticated advocacy

The Rare Disease toolkit section currently has 37 guides. Some are directly aimed at patients, others at people wanting to set up a patient group or improve their group’s effectiveness.

For example, there are toolkits on:

  • Firstly, starting a charity/not-for-profit patient organisation
  • Secondly, determining your fundraising strategy
  • Thirdly, setting up a disease registry
  • Fourthly, using storytelling to raise awareness of your rare disease
  • Fifthly, using social media
  • Following on, contacting biopharmaceutical companies effectively
  • And lastly, advocating with politicians.

The toolkits are usually written with input from patient groups and advocates, sharing their learning and experience.

Rare university, news channels and webcasting

Each year, the range of resources offered by Global Genes continues to expand. For example, there is now a free 12-unit online course available through their `Rare University’ on “Understanding Drug Development” which includes:

  • An introduction to the drug development process, and what happens at each stage, and what is different about drug development for rare diseases
  • The roles played by patients, funders, researchers and regulators
  • The regulatory review process. 

Rare Daily acts as Global Genes’ social media hub, including a mix of news, patient stories, guest blogs, and social media posts. Global Genes also produces regular rare disease podcasts and webinars. There’s also a listing of around 7000 rare diseases and conditions, and an events programme including an annual Rare patient advocacy summit. Global networking is critical to connect scattered rare disease patients. To address this, the Global Genes RARE Foundation Alliance includes over 500 disease foundations and other charities worldwide. 

A lot achieved in just 10 years, from one person’s vision. Here’s to the next decade.


Visit the Global Genes rare disease patient advocacy site at…

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Download PDF toolkits for setting up patient groups and improving their effectiveness at…

Click here

Find out more about the free online course on understanding patient involvement in drug development for rare diseases at…

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Review the list of around 500 global rare disease patient support groups, foundations and associations at…

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