Finding the Right Home for Your Rare Disease Community
As a leader in the rare disease space, you know that community is everything. It is a lifeline, a source of shared strength. It is a place to find answers when the world feels isolating, where making sure your members have a digital home that truly serves them is one of the most important things you can do.
But finding that space can be a difficult task. You are not just choosing software. You are building a home for your members. It must be a place where they feel safe, heard, and connected. This guide is here to help you out.
Together, let’s walk through the core needs of every rare disease community. We will explore the different types of platforms available, and will help you make a confident choice for the people you serve.
Why Choosing the Right Rare Disease Communities Matters?
Choosing your platform is more than a logistical decision. It is about building on a foundation that you and your members can rely on for years to come. A partnership with the right platform is a strategic choice.
Making this choice with care allows you to:
- Unburden your team. Free your volunteers from the constant work of translation and moderation. Let them focus on the human connections that matter most.
- Expand your reach. Connect with families across the globe who thought they were alone. Make your support network truly worldwide and inclusive.
- Reinforce your reputation. Offer your members a secure and private space. This reinforces your PAG’s role as a trusted, reliable resource in the community.
- Join the New Era of Patient Support. Be part of a new way forward for rare disease support; one that is collaborative, global, ethical, and of course human-first.
What Does Your Community Truly Need? The Five Pillars of a Supportive Digital Space
Before looking at specific platforms, let’s talk about what really matters. When we listen to advocacy leaders, we hear the same essential needs time and again. These are not just features, they are the five pillars of an effective community that a strong digital home must be built upon.
1. A Global & Inclusive Reach
Rare diseases, by definition, affect small populations. Your members may be scattered across continents. Language and distance can easily separate them. A thriving, flourishing community needs to break down these barriers. It must bring people together no matter where they live. How can we connect everyone in rare disease communities when oceans and languages divide us?
2. A Foundation Built on Trust & Safety
You work hard to protect your members. They are often sharing sensitive health information, and they need a space where they feel secure enough to be vulnerable. They must be shielded from harmful content and medical misinformation. Creating this kind of sanctuary is essential. How do we build a space where safety is the first priority?
3. Easy Access to Trustworthy Information
Finding good information can feel like searching for a needle in a haystack. The internet is full of noise. Your members need clear, reliable answers and shared experiences. They should not feel overwhelmed by their search for help. How can we help them find valuable insights without adding to their burden?
4. Tools That Don’t Drain Your Resources
Many patient advocacy groups are led by dedicated volunteers. Your time, energy, and budget are precious. You need efficient tools that help you with your mission. But these tools should not require a huge budget or a team of engineers. How can you find a platform that makes your work easier, not harder?
5. Control That Protects Your Mission
Your community’s data must be protected and respected. You need to know that the platform you choose serves your mission, not just a company’s changing business goals. You must be able to guide your community without interference. How do you ensure you stay in control of your group’s destiny?
Exploring Your Rare Disease Community Options: A Detailed Look at Your Choices
With these five pillars in mind, let’s explore your main options. Each path has its own benefits and drawbacks. The best fit will always depend on your group’s specific resources and priorities.
Option 1: Health Networks
These are platforms like PatientsLikeMe or Inspire, which are built specifically for health discussions.
- What Works Well:
- They are designed for health conversations.
- They often have structured ways for members to share data.
- The environment is focused on patient experiences.
- What to Consider:
- They are often focused on the US market and English speakers.
- Their business models may rely on selling data to other companies.
- After company acquisitions, data policies and trust can change.
- Information can be trapped within a single disease group.
Option 2: General Social Media
This includes using Facebook Groups or Reddit for your community.
- What Works Well:
- They are free to use.
- Most people are already familiar with them.
- They have billions of users, offering a wide reach.
- What to Consider:
- They come with serious privacy concerns. Member data is used for advertising.
- You have no control over algorithm changes that can hide your content.
- The moderation burden on your volunteer team is extremely high.
- Misinformation is a constant and serious problem.
- They lack any specialized tools to support patient advocacy groups.
Option 3: Community Infrastructure Tools
These are tools like Discourse or Bublup that let you build your own community.
- What Works Well:
- You have complete control over the platform.
- You own your community’s data and can ensure its privacy.
- You can design the space exactly as you wish.
- What to Consider:
- This path requires a significant investment of money.
- It demands a high level of technical skill to set up and maintain.
- You are fully responsible for everything. This includes security, moderation, translation, and all features.
- The total cost in time and resources can be very high for a PAG.
Introducing March: A New Approach, Built for You
We saw these challenges and asked a simple question. What if a rare disease community was designed from the ground up with the five pillars of a rare disease community at its core? What if you did not have to compromise between reach, safety, and control? This is why we created March.
Comparing Top Platforms for Rare Disease Patient Groups
| March | Dedicated Health Networks (PLM, Inspire, etc.) | Global Social Platforms (Facebook, Reddit) | Community Infrastructure Tools (Discourse, Bublup) | |
| Global & Inclusive Reach | Global-by-design; AI real-time translation connecting all rare diseases. | Often US-centric/English-first; limited native multilingual. Some recent Spanish expansion (MHT). | Global user base; Facebook auto-translate available but generic & not medically tuned. | Dependent on PAG’s own efforts & resources for global outreach and translation (plugins/manual). |
|---|---|---|---|---|
| Trusted & Safe Environment | “Patient Bill of Rights”: No data selling, ethical ads, AI + human moderation, org transparency. | Business models often rely on data licensing/pharma partnerships; trust can be eroded post-acquisition. | Significant privacy concerns (data for ads), high risk of misinformation, minimal expert moderation. | High privacy & control (if PAG-configured & self-hosted); PAG fully responsible for all safety/moderation. |
| Easy Access to Reliable info | AI-powered discovery surfaces relevant info across platform; AI Assistant for navigation; PAG-curated libraries. | Condition-specific forums are useful but info can be siloed; search may be limited. | Information is chaotic, unvetted, hard to search systematically; “needle in haystack” problem. | PAG must build and manage all information architecture; no inherent discovery tools. |
| Empowering Tools (PAG Costs) | Free, turnkey, AI-powered global toolkit for non-profit PAGs. | Partnership models for PAGs; tools & deeper access may involve costs or B2B commercial terms. | No specialized PAG tools; free to use but imposes very high administrative & moderation burden on PAGs. | Requires significant technical expertise & financial investment from PAG (hosting, setup, premium features). |
| Control & Ownership (PAGs) | PAG-centric model: PAGs are foundational partners with tools to lead their communities. | Partnership models for PAGs; tools & deeper access may involve costs or B2B commercial terms. | Minimal control for PAGs; subject to platform’s algorithms & changing policies. | High degree of control for PAGs over their instance, but they build/manage everything from scratch. |
A Partner in Your Mission, Supported by Patient-Centric AI
March is more than a platform; we are a partner for patient advocacy groups. We directly address the five pillars of a great community.
- Global & Inclusive from Day One: Our built-in AI translates conversations in real-time across 100+ languages. This is not an add-on. It is our core commitment to connecting every person. It removes the language barriers that divide even small communities.
- Trust Through Transparency: Our Bill of Rights is our public promise, that we never sell user data. Our goal is to create a safe place, where AI assists human moderators to find and flag harmful content. We require total transparency from organizations, to protects patients and build trust.
- Easy Access to Information: March’s AI tools help members find relevant discussions and resources. Our AI assistant helps users find information and understand topics without giving medical advice. It also makes it easier to identify and learn about potential clinical trial opportunities.
- Giving You Free, Ready-to-Use Tools: March provides a full toolkit for non-profit PAGs at no cost. We want to help you grow your mission, not your administrative work. You get powerful, modern tools without the financial or technical burden.
- Designed for Your Mission: On March, PAGs are foundational partners. You have the tools and the environment to lead your community effectively. Your work is aligned with your mission. You are not just another user of a service; you are a leader on a platform built for you.
Ready to March Forward Together?
We know the weight of the responsibility you carry. At March, we want to help lift that burden. We provide the tools and partnership to help your community succeed. You are not alone in this journey, and we are here to help.
Create Your Community on March
Want to learn more about our public promise to every patient? Explore March’s “Patient Bill of Rights.”