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Non-Profits and LEMS, Part 2, NORD, HealthWell Foundation, The Assistance Fund
With today (the day this posts) Rare Disease Day, it’s a natural ‘call to action’ time to support LEMS research and education. I wanted to see which non-profits do what and how much is done specifically for LEMS. Every organization has its own focus, and all appear to do worthy work for the rare disease communities they are dedicated to. The two organizations I’m going to cover in this topic offer financial assistance to LEMS patients, so let’s get started!
NORD, The National Organization for Rare Disorders, rarediseases.org
NORD has a web page with very basic information on Lambert-Eaton. They provide links to clinical trials and other, related organizations. If you dig down, they do have a LEMS video series on LEMS education. I did not take the time to watch it because it is quite lengthy.
NORD maintains a rare disease database of more than 1,200 diseases. They have a portal to the IAMRARE Registry program.
The good news for LEMS patients is NORD offers a premium and co-pay assistance program for LEMS patients in financial need. See their web page for further details and how to apply.
On the main NORD donation page, you cannot earmark your donation for LEMS.
On their ‘Research donation page,’ you can earmark your research donation to the NORD Rare Disease Research Grant.The HealthWell Foundation, healthwell.org
The HealthWell Foundation is focused on financial assistance when insurance just isn’t enough. They have a LEMS fund, specifically set up for us. I visited with them on the phone, and they told me the fund opens and closes as funds are available. If you need financial assistance for LEMS, check them to see if the fund is open and apply or get on a waitlist.
They provide financial assistance to cover the cost of prescription drug coinsurance, copayments, deductibles, health insurance premiums, and other selected out-of-pocket health care costs.
They cover Firdapse, Diaminopyridine, some immunoglobulin brands, and more.
You can directly earmark your donation to the LEMS assistance fund with The HealthWell Foundation.
The Assistance Fund, tafcares.org
The Assistance Fund does just what it says. They have a patient resource hub with limited information. They help patients with out-of-pocket medical expenses, insurance and medicine co-pays, and travel. At the time I checked the program for LEMS it was wait-listed.
You cannot earmark your donation specifically for LEMS on their webpage.
If any of these organizations interest you, or you feel you could use what they offer, please contact them directly. I always find it better to reach out and establish a relationship with an organization, to ensure both they and you benefit most from the relationship. Sometimes you can find out more through personal contact, rather than just relying on a webpage.
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2 Replies
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An interesting read Price! The Assistance Fund has been paying my co-payment for Firdapse for approximately 3 years now. Currently the cost is $49,997 per month for 240/month. I am truly so grateful for their help. I have to request end of each year to re-enroll in the program but they have made it so easy to e-mail the application back to them. There is never a guarantee the funds will be available for the next year but, so far, I have been so blessed to be accepted. Without their help I couldn’t afford it on my own. Also have to thank Catalyst Pathways for helping me navigate all the places I have to go to make the Firdapse available to me.
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@dordem Dorothy thanks for the nice words! Doing the research I was heartened to find these three non-profits who can help with the high costs of medicine and care. Like you Catalyst Pathways helped me stay on Firdapse during the FDA approval period and transition from study drug. Good people!
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