Eating Disorders Patient Groups Helping Each Other

Throughout their history patient groups have had a proud tradition of supporting each other. Whether reaching across countries or therapy areas, groups have networked, united, and shared ideas and advice. 

1: Getting started

Setting up a new patient group can feel like a daunting leap of faith. To help, Beth Rose, co-founder of a new group, Alaska Eating Disorders Alliance (AKEDA), shared what they recently learned about setting up their group over the last couple of years.

Writing about the experience in the Eating Disorders Resource Catalogue, Beth highlighted some key pre-launch steps including:

  • Writing a `prospectus’ to set out the goals of the organisation, goals, activities, proposed partners and potential funders
  • Confirming where the `gap’ was for patients – that Alaska needed a new not for profit organisation, rather than being a regional part of an existing national charity
  • Recruiting a `core group’ of supporters, including people with lived experience of Eating Disorders, parents and carers, and clinicians.
  • Contacting and visiting other Eating Disorders groups.
  • Legally establishing the governance of the group, reviewed by a volunteer attorney
  • Drafting the initial budget and an 18-month outreach plan.
2: Advice on admin and tools

Social media uniting patient groups are often sources of good advice for common challenges. Occasionally, groups organise their advice for other groups on their website.

For example, Yellow Submarine is a regional UK charity supporting people with learning disabilities and autism. On their website they pull together tips for other patient groups, on what they call their `open source’ page.

This includes guidance on how to:

  • Set up a group, in a downloadable guide capturing key learnings from the group’s first decade
  • Choose a fundraising platform, accounting and payroll software
  • Gain charity discounts on software
  • Set up a website
  • Share files around the group.
3: Advocacy toolkits

There are many advocacy toolkits available from patient groups. These differ widely in size, purpose and scope, and often are tied to legal structures in a particular country, or the specific needs of a particular patient community.

For example, the International Alliance of ALS/MND Associations offers a wide range of guidance and useful links on its `Advocacy toolkit’ page, including:

  • The benefits and challenges of different types of advocacy
  • How advocacy can help people with ALS (Amyotrophic Lateral Sclerosis) and MND (Motor Neurone Disease)
  • Tips for successful advocacy.
4: Pooled experience

Global Genes is a US-based not for profit advocating for rare diseases globally. It offers a wide range of downloadable guides including a toolkit called “So you think you want to start a non-profit?”

The toolkit is sponsored by 12 pharmaceutical companies, and although focused on creating US-based not for profit organisations, contains useful advice and links for groups in other countries.

In this together

Summarising her experience of contacting other Eating Disorders groups, Beth Rose co-founder of Alaska Eating Disorders Alliance (AKEDA) wrote:

“Through the summer months Jenny and I spoke with ED [Eating Disorders] leaders and non-profits in other cities…They were willing to share resources, materials, and contacts, expressing the conviction that ‘We’re all in this together’.”


Read the experience of setting up AKEDA at…

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Visit AKEDA at…

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Review Yellow Submarine’s `open source page at…

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Use the ALS/MND advocacy toolkit at…

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Download the Global Genes guide on setting up a group at…

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