How to build a rare disease patient organization
Our advice on how to build a patient organization for patients diagnosed with a rare disease.
Starting Out
Many rare disease patients and parents start out with Facebook. Facebook gives you different options for creating a Group. You can of course make an Open (Public) Group; this is the kind of group that anybody can join, and whose content is visible to anyone who is on Facebook. For patients and parents who are discussing healthcare issues, and who are sharing personal information about themselves or their children, an Open (Public) Group is not a good option.
Fortunately, Facebook gives you another option for creating a Group. Facebook allows you to create a Closed (Private) Group. With a Closed (Private) Group, not everybody can join; the Administrator of the Group has the power to admit new Members, or refuse them. Also, the content and the conversations within this Closed (Private) Group are only visible to people who are Members. If you’re not a Member, you can’t see the pictures or read the text, because the content is hidden from non-Members.
There are many advantages to starting out with a Facebook group, specifically, a Closed (Private) Group:
- Most adults already have a Facebook account
- Creating a Facebook Group is easy, and free
- Through Facebook you can find patients and parents like yourself, in your own geographical area, and in other parts of the world!
- By choosing the Closed (Private) option, you maintain a level of privacy and confidentiality
- Through Facebook you can, over time, identify other patients and parents who would like to take things to the next level, and create a formal organization with an actual legal structure
Taking things to the next level
If you already have a Facebook Group, or something similar, and you would like to now take things to the next level, we provide the following tips and advice.
Find a hardcore group of 3 to 5 people
- Assemble 3 to 5 dedicated people who will not quit, and who will do their best to make themselves available
Decide on a couple of initial projects
- What are the first couple of things that your professional organization will do? Plan out some actual, initial projects. This will bring things down to earth, so that you don’t get lost in the excitement of legal structures, titles, roles, and formalities
Draft a set of organizational goals
- The previous step, planning out the initial projects, will help you to see the big picture, what you are trying to achieve as an organization. Now, based on that exercise, write out 3 to 5 overarching organizational goals
- Don’t just think about patients with your rare disease. Think also about how your organization can play a role in the broader rare disease movement
Board makeup
- Determine who will be the President (and Vice-President, if you will have one); the Secretary (someone who likes writing); and the Treasurer (someone who likes numbers). That is, determine who will have which position in the Board of Directors
- If there is tension about who will lead, agree that at the end of year 1, or at the end of year 2, an election will be held to appoint new members to the Board
Medical Advisory Board
- Draw up a list of doctors who specialize in your rare disease, and who would be willing to serve in your organization’s Medical Advisory Board
- Assure them that your organization will be extremely respectful of their schedule, and their very limited time
- Emphasize that their involvement will be on a strictly volunteer basis
- Search everywhere for doctors who also suffer from your rare disease; these individuals are hard to find, but super valuable
Possible legal structures
- Do research on possible legal structures for the organization
- Consider what would be the easiest structure to set up, and what would make the most sense, based on your organization’s goals
- You might decide to set up in one country, even if your activities will focus on another country
- In some countries, you may need lawyers and accountants to establish the organization. Lawyers and accountants may also be necessary for maintaining the organization, year after year (annual reports on activities, annual financial reports; etc.). Lawyers (and accountants) are expensive. What can a new organization with little or no money do?
- Approach local law firms, and international law firms with offices where your organization will be based; request legal support for your non-profit organization on a “pro bono” (free) basis
- Chicken and egg problem: it is easier to obtain pro bono legal services after your organization is already established, and has a legal structure – because the existing legal structure demonstrates your seriousness to the law firms you approach. If you are just starting out, and you don’t yet have a legal structure, some law firms may brush you off. Keep looking, keep asking
Website
- For a professional organization, social media pages and profiles are not enough
- A professional rare disease patient organization should have a website
- Before worrying about the technical aspects, first focus on the actual written content of the site
- In a Word document, type out the content for four basic website pages:
- Home (where you will welcome visitors and introduce them to your organization)
- About (where you will describe your organization’s goals and activities)
- Contact (where you will provide a contact form, as well as links to your social media accounts, such as Facebook, Twitter/X, LinkedIn, Instagram, etc.)
- Blog/News (a page where you will publish news items or other periodic information)
- Together with the other members of the Board of Directors, decide on an easy to remember domain name which is still available
- Build a website using an affordable service like Wix, GoDaddy, Squarespace, etc., or, if possible, locate an IT person or an IT company that will do this for you
- Your organization should have at least one professional, organizational email address, which contains your domain name – not just a personal Gmail account or a Yahoo account
- You can set up a single professional email account containing your domain name (or multiple professional email accounts), with Google Workspace
Logo
- A well-designed logo projects a professional image, and can give you and your team confidence and pride in your work (like a nice and well-fitting dress or suit)
- If you are a not a professional designer, please do not make your own logo
- Try to find a designer who is willing to design a logo for you for free, or for a reduced price
Videoconference
- Set up a free Zoom account for your meetings; this will save money compared to face-to-face meetings.
Business cards
- Less important today than in the past
- A QR code can be set up to quickly exchange contact information during face-to-face meetings
Letterhead
- The organization’s logo can be inserted into the header or footer of a Word document, which can then be used as a template when sending out official letters, grant applications, etc.
Affiliations
- On the European level, join EURORDIS; on your own national level, join your national rare disease umbrella group
- In North America, join NORD
Get busy
- Pursue your goals; support one another; never give up
Contact us
We hope that the above tips and advice are helpful. We would welcome any feedback you might have, and any advice or stories you would like to share. Thank you.
Philippe Pakter, chairman, Pierre Robin Europe
