Why does it seem impossible to locate resources that we need to help us sustain our lives? It seems like everyone wants to help, but nothing is available. There are many organizations around the world that are designed to be resources for all of us in the rare community. Why do we struggle to obtain what we need? What does it take to get on those waiting lists, or receive that stipend to help pay for mobility aids? We have compiled a small directory of what we have found, and will share with you here.

Thrifting: Let’s Pop Some Tags!

Although thrift shops like Goodwill or The Salvation Army can be a total assault on the senses, they often have mobility devices at deeply discounted prices. Our tip is to go in the off-hours, or ask a friend to go looking for you. There are many folks who love a good hunt, and would be happy to help you out. That way, you don’t have to worry about the sights, sounds, and smells, and they can have the time of their lives!

Umbrella Organizations

There are many resources available through Rare Disease Umbrella Organizations. In fact, you can locate these resources right here on our website! Most offer patient financial assistance for out-of-pocket costs, location of specialists, and patient conferences. You can even apply for scholarships to attend their conferences! Umbrella Organizations serve the rare disease community as a whole, not as individual diseases.

It’s not just the umbrella orgs that offer help either! If you have comorbidities, go to other patient group websites and Facebook pages. They will often have loads of links to resources that can help you, or at least point you in the right direction. Most offer free support groups, which are a fantastic balm for the soul.

Find Resources On HODA’s Website!

It’s true! From National Ataxia Foundation to Blog posts to our monthly newsletter. We even have printable resources scattered throughout (but especially on the Patient Page). Can’t find what you are looking for? Send us an email at ContactUs@HODAssoc.org and we will email or mail it to you. Check out “Kim’s Picks” in the newsletter for great resource suggestions too!

Remember to sign up for our educational webinars as well! Don’t just sign up for ours, search the internet for any webinar that interests you. Many are free of charge, and are recorded and posted to a YouTube channel after they are done. This is the best way to get close to experts and ask those burning questions. We love a good educational webinar, and often sign up. If we aren’t feeling up for it, we can watch it later on YouTube.

Our Best Resource Locating Advice?

Go with the Pros! Get into the HOD Patient and Family Support group. People with the disease and those who partner in the care of those with the disease generally have the best resources. The group is not country specific. Chances are, you will find someone in your region who can help. If not, there is an excellent chance that you will find someone willing to help you anyway!

Our second tip is to use the internet. Google is a powerful tool. Maybe you search “Rare Disease Resources Near Me”. Or, look for Parkinson’s Disease Resources. HOD is classified as a Movement Disorder. We are a cousin to Parkinson’s disease, so their resources will likely work for us too! If you’re not sure what key words to search, ask the Facebook group, or you can reach out to HODA! We can help you too. When in doubt, just raise your hand and ask a question. There are many hidden resources all around you. Sometimes, it just takes asking a question to be the most resourceful!

YOUR TURN!!!

What are your go-to resources? Do you have tips to share with our audience? Share them in the comments!