What is Rare Disease Day?

Rare Disease Day is almost here!

Rare Disease Day is an annual international observance held on the last day of February (February 28th or 29th) to raise awareness about rare diseases and their impact on patients' lives. Rare diseases are those that affect a small number of people in the population, typically fewer than 1 in 2,000 people. However, there are over 7,000 known rare diseases affecting an estimated 400 million people worldwide, making rare diseases a major public health issue.

Rare Disease Day was first observed in 2008 and has since become a global event, with more than 100 countries participating. The day is coordinated by EURORDIS (the European Organisation for Rare Diseases) in Europe and the National Organization for Rare Disorders (NORD) in the United States.

The main goals of Rare Disease Day are to raise awareness about rare diseases, to advocate for better access to diagnosis, treatment, and care for people living with rare diseases, and to promote research into the causes and potential treatments for rare diseases. On this day, various events are organized, including conferences, seminars, and awareness-raising activities, to help raise awareness about the challenges faced by people living with rare diseases and their families.

Rare Disease Day aims to give a voice to those affected by rare diseases and to encourage greater attention and action on rare diseases at the policy, research, and healthcare levels. The day provides an opportunity for patients, advocates, healthcare professionals, researchers, and policymakers to come together and work towards improving the lives of those affected by rare diseases.

Big tech and Charities - How for-profit rules are burning out non-profits

Is it a war?  It feels like a war.   Is that a bit dramatic or paranoid?   Maybe.  Maybe not.

Not only do we have to do all of our work to help our causes (and that is a hard job in itself!), we have to constantly battle Big Tech for basic rights that most for-profits have.  

Have you ever had to deal with a site's tech support?  We all know that it's usually a special type of hell.

We gear up and enter that hell in order to be able to help other people.  And we usually get spit out with no help.  

Here is the story of what our charity goes through constantly:

Our charity has 7 NGO's. Social media and major sites have greatly harmed our ability to raise awareness and funds with their current set ups and rules. Let's discuss.

Only 1 of 7 of our charities can take donations on Facebook. It doesn't matter what governments or charity commissions deem us legal, Facebook outranks them. So our very critically ill children don't get donations. During a pandemic. No discussion is allowed. We had a couple of fake reviews on one of our charity pages that are clearly spam and very inappropriate for a children's charity page, but when we report it, nothing happens. They don't have to prove they are real. Amazon blocked us from selling awareness items because our "account admin can't be proven real". I've done everything but give blood. Driver's license, passport, security clearance, photos, letterhead. If my library card hadn't expired, I'd give them that too. Ebay has blocked our UK charity for "security reasons". No discussion allowed. Facebook has rejected our shops. So we can't sell awareness items through Facebook anymore. Unless we delete our current shop and only sell through them, adding over 1000 items by hand again. Or we could buy ads to our regular shop. But for-profit companies that steal graphics we (I personally) created to raise awareness and funds for the cause continue to sell items, despite our reporting them for stealing. Our biggest Facebook page has 32,000 page fans. On our best day now, only 150 people see a post unless we pay for ads. As a charity. Giving Tuesday is a week away and 6 of our 7 charities cannot take donations on Facebook. We could post about Giving Tuesday and ask for donations but less than 1% of our followers (people who "liked" our page and want to see our posts) will see anything we post. Black Friday and Cyber Monday could help us sell awareness items. But Ebay, Facebook and Amazon won't allow that. Again, we are a children's charity trying to help critically babies. Not a for-profit. After years of back and forth, begging and pleading, no help lines or help lines asking us to take hours / days to jump through hoops that don't fix anything (and losing precious volunteer / staff hours).... we could take it personally. Some days, I do. Ok, most days, I do. It's like living in the movie "Gaslight" sitting on tech support. "Yes, we did what you asked". "No, you didn't do what we asked". "Yes, we did. We have proof we did". "We said you didn't so you didn't. Banned. You can't appeal our final decision". It's like an alternate universe. A crazy-making, painful, alternate universe. If the objective is to wear us down, it works. Now, let me say that several people at the charity have tried to work with Big Tech to resolve these issues. It's not a case of me not being able to follow directions or losing my temper. It's a case of... the system is stacked against charities. Blatantly. Especially small charities. And I do not do victim mentality nonsense. But here we are... years later without all these issues resolved despite doing everything except selling our souls.. and things still do not work. We are not the only ones. I see complaints, questions, tears at least weekly from fellow charity leaders about these issues. Why? Why does Big Tech do this to charities? Facebook matches $8m in donations for Giving Tuesday. The big, multi-million dollar charities swallow that in less than 2 minutes. Most smaller charities don’t bother asking their people to try for the matching donations because the odds are stacked far against them and it makes more sense to use that energy elsewhere. What Facebook could do to help charities more is to let our posts be seen without charging us for ads. Please. Or don't make us cry trying to get things to just work. Charities have lots of work to do to become charities and maintain our status. We have to make the IRS and our states happy. For us, we have to answer to 7 governments. So if governments say that a charity is a legal non-profit, why does Big Tech get to say we aren't? I'd really like to write an editorial about this. Can anyone recommend a paper? Meta eBay Amazon.com #charity #charities Facebook asked if we would like to donations on this post. YES, yes we would! Can we share this please? Where are all my journalist friends? And friends who do work for these Big Tech companies? Show them please. Because charities are the good in the world. We help the sick, homeless, hungry, abused, scared, lost. We put others before ourselves, profit and we are put under microscopes 100x more than any for-profit company. So why aren't charities helped instead of harmed? We can do better.

National Patient Advocacy Day

 

Yesterday, August 19th, was World Patient Advocacy Day.

I had no idea until a fellow Patient Advocate tagged me in a post.

So I had no social media post myself, no graphic, nothing thought out or planned.

Yesterday was a tremendously busy workday, so I never got around to posting anything, but I thought a lot about what it meant.

My first thought was "We have a day? Who chose this day and why?".

I admit, I have done zero research to find out who or why (comment please if you know). I am just grateful.

We have a day!!!! A day to raise awareness of what exactly we do, who we are, why our jobs are vital to patients and why "Patient Advocacy" is a "real job".

We still struggle with Researchers and Industry understanding exactly what a Patient Advocate is.

What We Do:

• Rally patient communities
• Create natural history databases
• Create and supply disease information for patient communities
• Coordinate research
• Fundraise for research
• Write research papers
• Create and manage medical conferences
• Network with other advocates
• Network with pharma and industry
• Network with researchers
• Write books
• Give speeches
• Create videos
• Create presentations
• Give speeches
• Create graphics, newsletters, blogs, websites, phone apps, and awareness products
• Lobby with legislators
• Write / call 8435646534 Senators / Congressmen / Mayors / Governors to support research, patient services or sign proclamations. That might be a slight exaggeration in numbers.
• Write 8394387 letters a year asking landmarks to light upon our Awareness Day
• Prepare for and Board meetings
• Create fundraisers
• Hold fundraisers
• Tell our personal stories
• Tell other patients' stories
• Call / meet / e-mail / message / post and ask for donations to help the patient population 390457485649765464685 times. that is not an exaggeration.
• Write receipts and process the 43 donations that do come in from all those asks.
• Search for sponsors
• Write grant applications and LOI's
• Meet with donors
• Edit videos
• Stalk celebrities and ask them for help raising awareness
• File IRS and state forms
• File NGO paperwork
• Write letters of recommendation
• Oversee all employees and volunteers
• Make sure payroll is met, even if we don't get paid ourselves
• Create new projects
• Manage projects
• Join 8454 alliances and groups to better work with the overall patient community
• Start new alliances if there's a need
• Legal, accounting, insurance, etc... all the admin work needs to be done or overseen
• Constantly keep up with new research
• Frequently go back to school to learn new skills
• Keep up to date with HIPAA and GDPR guidelines
• Give interviews
• Write press releases
• Admin far, far too many social media accounts
• Monitor groups, forums
• Keep patients safe
• Correct inaccurate medical information
• Accredit hospitals
• Force Standards of Care when needed
• Force Standard Measurements when needed
• Deal with angry researchers when you have to beg/push/force anything for better care for patients
• Attend many conferences
• Collaborate on research
• Recruit patients for research
• Create budgets that we never reach
• Raise awareness every day
• Run podcasts and telethons
• Fight with insurance companies
• Fight with doctors and hospitals for better care
• Educate other stakeholders
• Fight for equality
• Have meetings. All day. Every day. With so many different people for different things.
• Work on committees. Too many committees.
• Travel a lot, sometimes to very sketchy places
• Work a lot, at all hours of the day and night. Especially if you are a global patient advocate.

Do you know why Patient Advocates exist?

Because being a patient or family member of a patient is emotionally, mentally, intellectually and physically exhausting. Navigating the medical world is overwhelming, confusing and often, terrifying. Because patients need accurate, unbiased information. Because doctors and nurses don't have time to answer every question or hold every hand and even if they did, patients can't and shouldn't pay for knowledge or hand-holding. Because fighting with insurance and industry is beyond the emotional energy level, education and physically capabilities of most patients and caretakers - they didn't go to school for this and they are trying to just survive each day. Who can spend 2 hours on the phone trying to find a tiny bit of information or resources for the medication or surgery that will keep them alive? Every single day? Because patients need leaders to rally and organize them for research. Because patients want to take charge of their own medical data. Because everyone needs someone to help them during the hard times in life; someone who knows how to navigate the system, knows the medical information, knows where to find help and who cares about them as people and does not profit off of helping them. Someone they know they can truly trust because that person has been in their shoes too.

And because patients need a voice! They haven't had one for most of the history of medicine. Medicine often forgets to see them as real people with real lives outside of hospitals and offices.

Sick person > see doctor > doctor fixes / trying to fix the problem however they see fit / have the capabilities to fix > doctor bills patient.

End of story.

It's neanderthal still the way that patients are treated on conveyor belts.

Patients deserve a say so in their care and to be a part of the plan in the fight against their disease - not just individually, but collectively.

We also:

• Are caretakers of our own patients / are sometimes patients ourselves
• Play referee sometimes between doctors. Sometimes between charities. Sometimes between patients.
• Stand up against anyone/anything that can hurt our patient population
• Get told "no" 9348574875646576 times (no exaggeration)
• Get treated like we don't belong sometimes
• Get looked down on and spoken down to very often
• Get told to sit down and shut up many times
• Fund much of this ourselves
• Deal with way too much drama
• Have to fight off nasty "competitors."
• Always have to constantly prove ourselves to research and industry
• Do what's right, not what's profitable

However, the most important things that we do:

• Meeting with patients
• Holding hands
• Giving hugs
• Finding resources
• Giving them a network of other patients
• Giving help
• Taking midnight phone calls
• Easy worries
• Making hospital visits
• Attending funerals
• Attending milestones like birthdays, weddings, graduations of survivors
• Checking on families
• Praying
• Loving the patients
• Loving the families
• Keeping up with patients by phone, email, visits, social media
• Cheerlead
• Support
• Fight for them
• Protect them
• Give them what they need to grow and have normal lives
• Mother (or father) if need be
• Educate
• Spread hope

We are not just the PTA moms; we are not doing small things. We are the leaders who represent the most important people in the medical industry - patients. We are their shields, protectors, voices. We don't supply a drug, a cure, a surgery, or sell any products. We do not profit off of anyone, and often we give too much ourselves. We are the gatekeepers, the organizers, the oil in the gears that can, and usually do, make the medical world run much more smoothly.

We keep everyone focused where they should be... on the patients.

I know some absolutely incredible patient advocates. So many other charity leaders, all the team and volunteers at CDH International, and all of our parents who advocate for their own children.

I'm a day late, always a dollar short but Happy Patient Advocacy Day to the angels who fight every day.

Next year, I will be on top of it! And hopefully, next year, research and industry will honor Patient Advocates too!