Top 10 Reasons To Get Involved With Your RARE Disease Non-Profit

14 Jan 2015, Keegan Johnson

Linda - Get Involved

One of the biggest problems I hear from RARE disease non-profits is “No one wants to get involved.  It’s always the same few people who are doing everything.  How do we get families involved with our organization?”.  Does this sound familiar?

On the other side, I have seen first hand how eager RARE disease families have been to get involved.  I have seen single families raise literally hundreds of thousands of dollars and communities of individuals come together to raise millions.  At the same time I have seen rare disease families thanking their non-profit organizations for giving them a chance to “Get Involved”.  So what’s missing?

The key is understanding (and providing) the key reasons why RARE disease families and friends get involved with their non-profit organization.  Take a look at the top 10 reasons to get involved, apply these to your own non-profit and share this post with your members to show them what they will get out of  “getting involved”.

So here we go!

Top 10 Reasons to Get Involved With Your RARE Disease Non-Profit

1. Empowerment

“Having a child with a genetic disorder required me to redefine myself and I lost a part of myself in the process. Hosting a walk forced me to step outside of my comfort zone, but when the walk was over, I realized I found a part of me I thought was gone. I got my mojo back.” ~ Gretchen Golub (mom of child with a rare genetic disorder)

If you have ever had to face getting a rare disease diagnosis for yourself or your child you know just how debilitating it can be.  In an instant your whole world has changed.  Immediately you feel alone (no one else has this disorder) and scared (even the doctors don’t know about this).  It sucks.

As Gretchen says, getting involved with your RARE disease organization provides you an opportunity to “Get Your Mojo Back”.  All of a sudden you can take back your sense of control.  You realize you aren’t just a victim and you CAN make a difference in your outcome. Talk to any family who has gone through this transition and they’ll let you know just how powerful this change can be.  If you have ever met any of the strong, committed, and sometimes :) outspoken advocates in our community you know what I’m talking about.

Get Empowered. Do it for yourself.

2. Meet New People and Other Families

As mentioned earlier, getting diagnosed with any disorder can be extremely isolating.  The absolute best way to handle this is to get involved with your rare disease organization.   There is nothing better than working towards a common goal (like finding a cure) to create lifelong friends.  I often hear, “You’re the best friend I wish I never had.”

It’s also great to get out of your own social circle.  Outside of your work and family we sometimes stop meeting new people.  As rare disease typically cuts across cultures and social circles it is a great way to meet different people.  As humans, we are all craving social connection.  I can tell you from personal experience that some of my closest friends are now people that I have met through the rare disease community.

Get Connected.

3. Find the Latest Treatment Information

Your local doctor is a great start, but your rare disease community is where you will typically find the latest information.  People dealing with a rare disease are constantly searching for the latest and greatest information.  This is even more true for groups that are active through social media.  New treatments, tricks and information travels like wildfire.  Now please make sure you verify anything you find by talking to your medical professional, but the real experts are the RARE disease patients and parents.  It is literally life and death.

Get Informed.

4. Have Fun

Getting involved is not all hard work. In fact, if you are doing it right it should be a ton of fun.  No seriously. Whether it’s conferences, fundraising events or parties being around people who ‘get it’ is liberating.  No explanations, no pretenses, just people who understand.  The emotional ups and downs of dealing with a rare disease are exhausting, but the time spent with people in your community is awesome.  You also have an opporutnity to do what you love.  If you love golf, then why not run a golf event for your organization.  Love galas? Run one.  Combining your passion with a great cause and life long friends is a recipe for the best time of your life.

Get excited.

5. Gain New Skills

You may not have set out on purpose to gain new skills, however getting involved with your rare disease non-profit is the perfect setting to do this.  Fundraising, accounting, management, technology development, marketing, community management, researching, advocating, lobbying, event planning, writing, social media management  … there is no lack of opportunity to develop new skills and contribute.  In fact, it is probably difficult to get involved and not learn new skills.  The experience you gain will translate directly to the workforce.  Your resume will be full of new experiences and skills … not to mention the new network of connections you will build.

6. Set an Example

Whether it is our children, our family or our friends, getting involved is the best way to set an example for your loved ones.  My wife and I have had a lot of conversations on this point.  We know our son (with a rare disease) is going to have a ton of challenges that other children don’t.  We also know that the best way for him to be successful is to learn to work hard and address these challenges head on.  The best way to help him learn this is to set an example.

After seeing everything we have done in building our foundation and raising money, he knows that ‘our family fixes problems’ .  If he has a problem he knows he’s got to figure out a plan and then go and do it.  Words aren’t enough.  Getting involved and setting an example is the best way to get this message across.

7. Get Access to Experts 

If you get involved you will make personal connections with experts in your disease from around the world.  You will also learn about upcoming clincial trials as soon as they’re launched.  If you have a question, you’ll be able to reach out personally to the top experts and get the answers you need in a timely fashion.  Our disease are complicated and usually require a team of professionals.  These experts are just not available in every city.  By getting involved you will be able to build an all-star team of experts from around the world to help with your challenges. 

Get treatment.

8. Help Others

My wife and I didn’t get involved to ‘save the world’, we got involved to ‘save our son’.  However, along the way helping other families has been extremely rewarding.  Talking to a family who has been recently diagnosed, telling them their child is going to be okay and knowing the work we have done is going to benefit a ton of other people is amazing.  In the rare disease space, you quickly realize its up to you.  There is literally no one else.  Rare disease advocates know exactly what Gandhi meant when he said “Be the change you want to see in the world.”

You may not realize it yet, but you have exactly what your community needs.  I talked to a mom who told me once she couldn’t help anyone else.  She said, “I have no skills, I have no money, I can’t fundraise and I can’t even take care of myself.” I said, “You have THE most important thing your community needs.  You have your story. Simply by choosing to get involved and sharing your story you make it easier for others.  Imagine if eveyone chose to get involved.

9. Be Part of Something Bigger Than Yourself

A basic human need is to be part of something bigger than ourselves.  This is one of the biggest drives we have.  RARE disease organizations provide the perfect opportunity.  You will be on a mission along with everyone else with your rare disorder.  To be successful you will need the talents of different people across your community.  Seeing the progress your community makes (and you will make progress) will be one of the most rewarding things you do. As you see your community come together, you will experience first hand the ‘power of community’. Trust me.  This is a big deal.

10. Eliminate a Challenge of Your RARE Disease

Whether your organization is working towards a cure or providing support, there is one thing every person or parent with a RARE disease is looking for.  Everyone is looking to “eliminate the challenges of their rare disorder”.  We go about it in different ways.  Sometimes we push research to eliminate medical challenges.  Sometimes we provide best practices to eliminate the challenge of outdated medical advice.  Sometimes we provide information to help with accessing and paying for treatments.  If you could eliminate just one challenge of your disease (and you can), it would all be worth it.

As Margaret Mead said, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”

In Summary

Just to be clear, getting involved is going to change your life.  Get involved in an organization that focuses on research or support.  Get involved at the international, national, state or local level.  Get involved with fundraising, administration or simply sharing your story.  It all helps.  The key is choosing to get involved.

Consider this:

1) Walmart is the world’s largest employer with 2.2 million employees.

2) There are 350 million people worldwide suffering from a rare disease.

If everyone with a rare disease chose to get involved, we would have the equivalent of over 150 companies the size of Walmart working on eliminating the challenges of rare disease.  Imagine what we could accomplish.  Individually we are rare, but together we are strong.

Let’s do this!

Keegan (Dad of a son with a rare disease)

p.s. If you are still reading this post, go sign-up to get involved with your rare disease organization right away.

p.s.s. If you are still here and need a way to raise money for your rare disease chcekout