Resources
Empowering rare disease families with trusted tools, connections,
and knowledge to accelerate their journey toward hope and healing.
Newly Diagnosed
We know that receiving a rare disease diagnosis can turn your world upside down. In the midst of fear, grief, and unanswered questions, you deserve a place that feels steady, clear, and full of care. This space is here for you—to offer comfort, connection, and guidance as you begin to navigate this new reality. You’ll find trusted resources to help you understand what’s ahead, connect with other families who truly get it, and take small, empowered steps forward. You don’t have to do this alone—your village is here.
Day-to-day Survival
The day-to-day of living with a rare disease can be physically and emotionally draining. At Rare Village, we understand the toll it takes on families and are here to support you with practical tools, tips, and shared experiences. Whether you’re managing daily care routines, coordinating appointments, or simply trying to find moments of peace, we provide resources to help lighten the load and remind you that you are not alone. Your well-being matters, and we’re here to help you navigate the challenges with strength and support.
Caregiver
Support
Our online group connects parents and caregivers, offering a safe space to share experiences, seek advice, and find emotional support from others who truly understand.
Mental Health Resources
Resources such as The Family Caregiver Alliance and TherapyChat connect parents and patients with mental health professionals for emotional support and counseling.
Rare Journey Guidance
Many organizations provide a wealth of knowledge and connections so families don’t have to reinvent the wheel after their diagnostic odyssey.
Global Genes’ Rare Concierge
NORD Support Helpline: 1-800-999-6673
Clinical Trial Search Tools
Hope is a few clicks away. ASGCT offers a Clinical Trial Finder, and current clinical trials are listed at clinicaltrials.gov
Finding your community
The rare disease odyssey can be a very lonely road. It’s important to connect with other patients, caregivers, and families who are struggling with the same experience. No one understands living grief, racing against the clock, or overcoming hurdles like rare disease families. It takes a village.
Join our Facebook Group
Meet other rare disease families, share resources, find information, and forge meaningful connections.
Global Genes
Join a globally connected community committed to eliminating the challenges of rare disease.
National Organization for Rare Disorders (NORD)
NORD partners with international organizations and consortiums to drive global progress in policy, advocacy, research and care.
EveryLife Foundation for Rare Diseases
By activating the patient advocate, EveryLife strives to change public policy and save lives.
Telling your story
A crucial part of rare disease advocacy is awareness – which comes from sharing our stories. The more voices we uplift, the louder our community becomes. This welcomes the recognition, funding, and change needed to research and treat rare diseases.
EveryLife Foundation for Rare Diseases
The Share Your Story Quarterly Webinar series provides tips and tricks on how to best tell your story before practicing and receiving feedback from coaches.
Global Genes
The community stories publication on Global Genes’ website features the rare disease stories of patients, advocates, caregivers, and supporters.
25 Million Wishes
Imagine not knowing if this birthday wish is your child’s last. For 25 Million Children and their families living with Rare Diseases in North America, this is their reality. Join our movement to celebrate the unique and beautiful lives of all 25 million rare children through awareness, action and research development. Share your story today
Rare Disease Day
Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity!
Research Ready
At Rare Village, we empower families to take an active role in the research process, helping them navigate the complexities of finding treatment solutions for rare diseases. Whether you're looking to fund new research or get involved in clinical trials, we provide the resources and connections to guide you every step of the way. From building a research fund to partnering with experts, we’re here to ensure your voice is heard in the fight for better treatment options. We understand that the journey can feel overwhelming, but you don’t have to face it alone. Together, we can accelerate progress and make a meaningful impact for your family and the entire rare disease community.
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Diagnosis
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Starting a Fund with Rare Village
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Gathering Information
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Engaging with Experts
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Research and Literature Review
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Identifying Research Gaps
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Developing Research Proposals
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Applying for Grants
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Forming Collaborations
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Launching Clinical Trials
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Advocacy and Awareness
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Sharing Findings
1.Diagnosis – Receiving a confirmed diagnosis is the first step in understanding your child’s rare disease.
2.Starting a Fund with Rare Village – Launch a fundraising initiative with Rare Village to support research, clinical trials, or treatment options
3.Gathering Information – Collect research, medical data, and patient stories to better understand the disease and its impact.
4.Engaging with Experts – Connect with medical professionals, researchers, and institutions specializing in rare diseases.
5.Research and Literature Review – Review existing research and ongoing studies related to the disease to understand the current landscape.
6. Identifying Research Gaps – Determine the areas where research is lacking and where progress is most needed.
7. Developing Research Proposals – Work with experts to develop detailed research proposals, focusing on your child’s specific disease.
8. Applying for Grants – Seek out and apply for grants from government agencies, private foundations, and pharmaceutical companies.
9. Forming Collaborations – Partner with research institutions, universities, and pharmaceutical companies to access additional resources and expertise.
10. Launching Clinical Trials – If applicable, work to launch or participate in clinical trials that could lead to new treatment options.
11. Advocacy and Awareness – Advocate for your child’s disease, raising awareness to generate interest in research and treatment development.
12. Sharing Findings – Share research findings with the community, clinicians, and researchers to drive innovation and create pathways for future treatments.
Fundraising
At Rare Village, we understand that funding is a crucial part of advancing rare disease research and securing better treatments for children and families. Our fundraising platform is designed to make it easy for families to create personalized campaigns, rally support, and raise the necessary funds for research, clinical trials, and other medical needs. Whether you're starting a fund in honor of your child or supporting a broader cause, we provide the tools, resources, and guidance you need to reach potential donors. With Rare Village by your side, you can tap into a compassionate community and accelerate progress toward the care your family needs. Together, we can make a lasting impact.
Step 1: Tell your story
Imagine not knowing if this birthday wish is your child’s last. For 25 Million Children and their families living with Rare Diseases in North America, this is their reality. Join our movement to celebrate the unique and beautiful lives of all 25 million rare children through awareness, action and research development. Share your story today.
- Storytelling Workshops – Many rare disease foundations offer workshops that guide families through crafting and sharing their personal stories in impactful ways.
- Rare Disease Blogs and Websites – Websites like The Mighty and Rare Disease Day provide a platform for individuals to share their experiences and connect with others in the rare disease community.
Success Stories
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"As rare parents, we face a decision to wait for a treatment or to create one. Time is critical and I didn’t know how to start a non-profit or how to initiate the research and development process. Rare Village provided a solution to both of these problems."
- Jamie, Miren's mom
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"We don't even know how to begin to thank the Rare Village Foundation and Kasey. After our son Riaan was first diagnosed with Cockayne Syndrome, the prospect of starting our own non-profit organization to raise funds to advance research was daunting. Rare Village not only did not charge any administrative fees to be our fiscal sponsor but they lent us the kind of support that only parents who understand our situation could."
- Jo, Riaan's mom
Frequently Asked Questions
Newly Diagnosed
Where do I even begin?
Your Rare Village is here to help, because we know firsthand how precious time is with a rare family. Reach out to us at info@rarevillage.org to get started fundraising for research or treatment options today.
Is there anyone else out there going through this?
YES! The Rare Village Foundation was formed by two moms who have been where you are right now, because it truly takes a village. Join our Facebook group for community support, and reach out to us at info@rarevillage.org for resources. Rare does not mean alone!
Are there any research or treatment options?
We understand your urgency firsthand. Rare Village is here to help you move quickly toward a cure or treatment, and we are here to help you navigate clinical trials, gene therapy pipelines, natural history studies, and compassionate use options.
How can we fundraise for research or a cure for our child?
We are a fiscal sponsor that allows you to fundraise using Classy, and provides a customizable website, fundraising strategies, and support during your rare disease journey.
What will this mean for our everyday life — work, siblings, finances, school?
Life beyond a rare diagnosis can feel like a blindfolded race against the clock. We’re here to provide the resources, community, and tools to support you through this unanimously unwanted journey.
Research Ready
What kind of research already exists for this disease?
You can begin by searching scientific literature and public databases to see what’s been studied and published. This helps you understand where the gaps are and what progress has been made.
Resources:
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PubMed (pubmed.ncbi.nlm.nih.gov) — free access to biomedical research articles.
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ClinicalTrials.gov (clinicaltrials.gov) — see ongoing or completed trials.
Orphanet (orpha.net) — rare disease knowledge, including research summaries.
What kind of treatment is even possible — gene therapy, ASOs, repurposed drugs?
Different diseases respond to different types of therapies depending on the genetic cause and disease mechanism. Early research can help identify which approaches have the most promise.
Resources:
- NORD’s resource library, which offers disease-specific treatment research summaries.
- ClinicalTrials.gov — filter by therapy type.
Gene Therapy Net (genetherapynet.com) — educational resource on gene therapies.
Who can help us build a scientific team or research plan?
It’s critical to find experts who understand your disease’s biology and have experience in drug development. These can be academic researchers, clinicians, biotech partners, or CROs.
Resources:
- Rare Disease Clinical Research Network (RDCRN) — funded by NIH, connects families to research centers.
- Global Genes’ Rare Disease Partners directory.
- NORD IAMRARE® registry — connect with researchers and studies.
Which type of therapy is most viable for our child’s disease?
The most viable therapy for your child depends on the specific gene mutation and how the disease affects the body. Options might include gene therapy, ASOs, enzyme replacement, or repurposed drugs — but the right fit varies by diagnosis. A geneticist or research advisor can help you evaluate what’s possible based on current science. Rare Village can connect you to trusted experts, research tools like ClinicalTrials.gov, and resources like NORD’s library to guide your next steps.
How do we do this safely, legally, and fast enough to help our child?
Navigating ethics, regulations, and timelines is complex but essential. Engaging with experienced researchers and regulatory consultants can keep your project on track.
Resources:
- Institutional Review Boards (IRBs) at research institutions — oversee ethical compliance.
- FDA Expanded Access / Compassionate Use programs (fda.gov) — pathways for access to experimental therapies.
- Rare Village’s community and experts — help families understand regulatory processes.
- Clinical trial design guides — available from NIH and other research agencies.
Fundrising
Where do we even start, and how do other families raise so much?
Start with your story. Families raise millions not because they’re celebrities — but because they’re honest, persistent, and strategic.
Begin with:
- A compelling story and photo of your child
- A simple ask (like $25 donations)
- Sharing your website hosted by Rare Village
Families often:
- Use peer-to-peer campaigns
- Host events (virtual or local)
- Share progress with donors regularly
Rare Village provides:
- Examples, templates, and mentorship from other rare parents
- Support launching your fundraising campaign
- Tools for storytelling and social media
How much do we need to raise, and what will it actually pay for?
The amount depends on your treatment path and how far along the science is.
Early research (like creating a mouse model or doing preclinical testing) often costs $250,000–$1M.
Custom therapies like ASOs or gene therapy can range from $1M–$5M+.
If you’re funding part of a clinical trial, the costs can be higher.
You don’t have to raise it all at once — breaking it into phases with clear milestones helps build trust and keeps it manageable.
What if we don’t have a big network or wealthy donors?
You don’t need a massive network — just people who care.
Fundraising success is built through:
- Many small donations (they really add up!)
- People sharing your story across communities
- Leveraging local press, influencers, and rare disease allies
Other strategies include:
- Matching gift challenges
- Facebook birthday fundraisers
- Partnering with local businesses or schools
Rare Village can help you:
- Expand your reach
- Connect with others raising for similar conditions
- Share your campaign with a broader audience
Is fundraising even worth it if there’s no cure yet?
Yes — because your effort lays the foundation for a future that wouldn’t exist otherwise.
You might fund the first-ever model or first study for your child’s disease
You may help attract researchers, biotech interest, or even FDA engagement
And along the way, you’re creating hope, data, and momentum
Progress doesn’t always happen overnight — but every dollar, every story shared, brings the rare disease community one step closer to answers.
At Rare Village, we believe in family-led progress — because that’s where most rare disease breakthroughs begin.
Training
Can donors get a tax deduction if they give through my Classy page?
Yes. Because your campaign is hosted by Rare Village, a registered 501(c)(3), all donations made through Classy are tax-deductible to the full extent of the law. Donors will automatically receive a tax receipt from Rare Village after giving.
Is the money raised through Classy mine to use however I want for my child?
The funds raised must be used for your stated charitable purpose, like research, clinical trial costs, or scientific development for your child’s rare disease. This protects your campaign’s tax-deductible status and keeps it compliant with nonprofit laws. We work with you to approve eligible expenses and handle disbursements.
How do I update my campaign or access donor info?
You’ll get a link to manage your page, including tools to:
- Edit your story, photos, and goals
- Post updates
- See donor names and messages (unless they gave anonymously)
If you need help, Rare Village is here to walk you through any edits or strategy support.
Does Rare Village take a cut of the donations?
Rare Village does not charge you any administrative or hosting fees. Our fiscal sponsorship is 100% free to your family.
However, Classy and Stripe do charge small industry-standard processing fees (about 3–4%) on each donation. These go directly to the payment processor, not Rare Village.
