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American Porphyria Foundation

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Nonprofit Overview

Causes: Education, Educational Services

Mission: Porphyria education and research.

Programs: Porphyria education and research - dissemination of information to thousands of individuals affected by porphyria and grants to physicians for research

Community Stories

22 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

The American Porphyria Foundation is an outstanding organization. Their staff at the office helped me through every step of the way through my journey and numerous others just like me. I am so grateful for the help and support they provided to me.

General Member of the Public

Rating: 5

This foundation has helped me in many ways. They are great about sending the correct information to your doctor/doctors on treatment and information about this disease. I was diagnosed after years of issues where no one knew what was wrong. I have found alot of people in this group who have become my tribe. A few people commenting don't have Porphyria and they do have a list of doctors in states that are knowledgeable about Porphyria but they get that lost from patient communication. It's hard to have a list of them in every area as they don't have many "experts " in this field. I have had Desire call a hospital in the middle of the night to speak with a doctor on proper treatment and management. She is a great person to get you help if you reach out to her. They also offer free DNA testing as well for family members if a person in the family has a diagnosis. They do great things for our community.

Craig L.2

Volunteer

Rating: 5

The APF has been in my life since I was originally diagnosed with EPP back in 1994. To say they are the leading voice for all things Porphyria in the United States would even somehow be an understatement. I can speak from experience that they are the place people go when they first get a diagnosed that they or their family member has Porphyria and the APF supplies you with the information and the comfort that everything is going to be okay. They are ran by an exceptional group of people who want to expand the knowledge and awareness of these rare disorders across all forms of the medical field and mainstream society. I don't know where people with EPP and other forms of porphyria would be without this great organization.

Candace C.3

Volunteer

Rating: 5

The American Porphyria Foundation (APF) is an outstanding non-profit. Their mission is to educate physicians and patients, as well as to support research. Through the APF, people like myself with porphyria receive current information critical to our getting proper treatment. The APF quarterly newsletter, provides information on MD led patient education meetings across the country. They inform patients of clinical trials for their specific type of porphyria. Additionally the newsletter provides articles by experts, conferences to attend, member stories, and updates on how the APF is collaborating with other non profits. The APF website is amazing and includes a portal for physicians to educate themselves on porphyria, including what drugs deemed unsafe for some patients. The APF is compassionate to members and non members alike, always willing to support patients and their families, (no matter where they are in the world) on their journey with porphyria. The APF staff makes a positive impact on patients with porphyria. Personally, the APF inspired me to volunteer. They connected me with other nurses who also wanted to help. Together, we formed a Porphyria Nurse Advocacy Group to help spread awareness about Porphyria.

1

Client Served

Rating: 5

The APF is an amazing organization with a noble goal: to help porphyria sufferers identify, understand, manage, and treat their very rare diseases. This foundation has supported me and my family since I was very young and I find it to be a beautiful thing that a set of professionals, researchers, and physicians have taken an interest in such a little-known patient population. I have met incredible people through my experience with the APF, and I am deeply grateful for all they have done for me.

dw101

Client Served

Rating: 1

Contacted Desiree 3 years ago, still waiting for a return phone call that never have happened. It took me many times to get a hold of anyone there only to be shut down with endless voicemails and no responses. Had to go it alone and struggle to near death due to this. Organization even in 1992 had issues back then with helping my family. I don't get how this company can really say it's helping when in fact a lot of those like myself are not getting any help at all from them! They failed my family and me, which is 4 of us. What a waste. I feel the organization should be torn down forever and nonprofit status be revoked.

2

General Member of the Public

Rating: 1

If you or a family member have porphyria or are seeking a diagnosis, AVOID the American Porphyria Foundation. They do not give true medical information to members of the public. I am from the UK and the APF Global Director got involved with a local UK Facebook Support group when I challenged the British Porphyria Association to be advocates for undiagnosed porphyria patients. I was then blocked from a UK Support group. The tentacles of the APF are far reaching and poisonous, as they seek to keep porphyria ultra rare. Patients struggle to get diagnosed and treated due to their behaviour. They urgently need to be shut down.
Deceit is common in APF, for example one of the reviewers posted (Amy) as a member of the general public when she works for the American Porphyria Foundation. Notice she claims to have received financial help from the APF.

Amanda B.28

General Member of the Public

Rating: 1

The APF are a scam organisation. They are all about money! They have colluded with pharmaceutical companies to keep diagnoses low so that they can get the extra funding under the 'ultra-rare' category for orphan drugs. They have infiltrated porphyria care in all parts of the globe and are deliberately stopping people from getting a diagnosis and treatment, despite knowing that they are injuring and killing people. The so-called 'Global Director' interfered with my children's diagnosis and treatment from the other side of the world. It almost killed my children! They deliberately neglect rigorous investigation and publication of the comprehensive way to diagnose this complex disease, instead replacing it with a simple 1 step diagnostic test, which has seen thousands of people, young and old, all over the world suffer incomparable pain and hardship. To me, they are criminals and should have been closed down a long time ago.

Laura Lankenau R.

Client Served

Rating: 1

In 2016 I reached out to the APF for help with my very sick daughter. After a 2 star APF referred Dr lied to us about symptoms and I complained to then executive dir. Desiree (now Global dir.) she viloated my families HIPPA. I also have a HIPPA and Board of Health ruling against another APF Scientific advisory Board Dr. When I went public with proof on a face book Porphyria group the new exec dir Kristen failed to remove Desiree or the Dr on the SAB or Amy an APF employee engaged in cyber stalking of me who created a fake face book account called Paris England. Desiree confronted me via pm about my adult daughter's private medical info she wasn't authorized to access (the pbg urine test) the org pays certain Drs annually and she got a hold of our records illegally that way. This is possibly a felony. This charity shouldn't be anywhere on your site. I founded my own Porphyria org because of how terrible the APF is. If I could give negative stars I would.

General Member of the Public

Rating: 1

I was encouraged when I found the APF site. They recommended that I take the Invitae genetic test, however when it came back negative, I felt abused by their remarks. The test even states it does not rule out Porphyria. APF leadership told me that it meant I do not have porphyria and I should now go find out what I do have as a disorder. They were more than horrible, especially since it is now proven that porphyria is and was the correct diagnosis. They are not doctors.

1 Mike B.19

General Member of the Public

Rating: 5

After my porphyria diagnosis the foundation helped me get treatment, taught me about safe medications, and even helped me get involved in research. They are trustworthy, knowledgeable, and are involved in helping people get proper treatment and even navigate insurance.

2 Terri W.3

Client Served

Rating: 5

I was diagnosed with Acute Intermittent Porphyria a few years before the American Porphyria Foundation was founded. I know what it is to be without their knowledgable staff and members and without the support that they have shown to me on many occasions. I am SO thankful for this great group!

2

Volunteer

Rating: 5

I was given a death sentence in Jan 2019, at 72 lbs after going fully paralyzed at age 36. I pulled through and 3 years later, I was given a diagnosis of Acute Intermittent Porphyria. The minute I was told it might be such diagnosis, I turned to the internet for help, but found only the American Porphyria Foundation (APF) to be trustworthy. I immediately called for help and they became a huge resource in our dark cloud. They connected me with the experts and all the help I needed to start living my new reality. I still turn to APF daily for support. I have found a community that understands me. I love watching how APF helps all patients and caregivers find solutions to our daily struggle. Aside from benefiting as a patient, I am proud to turn around and help donate my time for such incredibly life-changing foundatioin.

1

Volunteer

Rating: 5

After getting a diagnosis of porphyria in 2008 the American porphyria foundation has provided me with both knowledge and support that has helped me navigate through life while dealing with porphyria. For the past few years I have volunteered my time as a way to give back to the entire porphyria community after everything the American porphyria foundation has done to help me.

1

Client Served

Rating: 5

I have known about APF my whole life but really only engaged with them over the past several years. As the world has evolved and become more connected thru both the internet and social media, information and work done by APF has become more readily available. I have found that employees are extremely responsive, caring and above all treat me with both respect and dignity. I have found APF to be a champion for its clients and a quarterback when it comes to resources, medical help - you name it! Their leadership is well-respected within the medical community. I have connected others with APF as a top-notch resource, and would recommend them to anyone looking for help with porphyria.

Client Served

Rating: 4

I am dismayed by the fact there seems to be so much negativity surrounding this foundation. The disease is bad enough that one should not undermine the groups trying to support our mutual cause. I see a lot of complaints about getting a diagnosis. The APF was very clear on the process and tests necessary to get diagnosed. I spent a lot of time and money in the process but getting a reputable diagnosis was very important to me . . . Plus I wanted to know what I actually had. The foundation has worked to increase testing accuracy, identify good labs and support genetic research. The advice on the website is clear and despite a cost (usually under $500) you can find out if you have the disease or not. I read the reviews and saw complaints about the cost of diagnosis. Think about the time you miss from work, unproductive doctor visits and the sheer mental effort wasted to complain instead of advocating for yourself or loved ones. Direct you anger and efforts toward something positive. No other foundation or group representing the porphyrias has the technical information, international contacts, political contacts and resources necessary to advocate for patients effectively. I am thankful everyday for the medical professionals I worked to assemble for my care and the APF for helping me through the process. I cannot speak to the effectiveness of their Facebook site . . . If someone is looking for information concerning their health on a social media site rather than looking at the literature on the APF site and consulting with your medical professionals about your specific case--let's just say that mass media is not the forum where I want to get my medical information. As far as I am concerned this is a solid organization trying to help as many people as they can.

1

Client Served

Rating: 5

The APF is an outstanding organization. When I needed , they were on the spot. They returned my call promptly and sent copious information to me and my doctor. I live on a small income and told them that I could not donate. They placed me on the member list anyway and have NEVER asked me for money, though I wish I could help.

My doctor was very impressed with the informative material he received from the APF. It was a large packet that arrived only a few days after my request. He also called one of the specialists whose name he said he recognized and was surprised that the doctor spoke with him about my case.

Also, the staff at the foundation were lovely and remember me when I call. I give them a gold star for education and patient support.
Jane A

3

Professional with expertise in this field

Rating: 5

One of the most important things the APF does is the fundraising it does to provide younger doctors with the opportunities and training to become the next porphyria specialists. Grants can be difficult to obtain in regards to rare disease-- especially when it comes to developing and advocating new techniques to treat these diseases. The American Porphyria Foundation's "Protect Our Future" program is in charge of making sure that in the future there will always be available porphyria specialists, hopefully across the country and in the world. And of course, the best thing they do is inform the public about what the disease is and how to talk to your medical professional about it-- including pamphlets, ER information packets, and a wide range of information to be disseminate. If you trace this disease's publicity, much of the work in understanding it comes straight from the work individuals within the APF do to promote awareness.

12 Tammy17

General Member of the Public

Rating: 1

Frist to start off with~~ the reviews from AMY and ROB well they work for APF so I really don't need to say anymore on that!! For 30 years of (getting awareness out) You will find it hard to find a hospital that has any info on Porphyria and just ask ANY doctor you come across they will look at you like you have 2 heads... My point is that ALL the money going into APF for 30 years you would think that the hospitals would have got info from them. They have not... Everyone needs to do there homework and find out for there self about this foundition....

3

General Member of the Public

Rating: 5

I would like to say that Porphyria has been in the family for many generations, and long ago there was no help no DX and no knowledge of this horrific diseasae. The American Porphyria Foundation has helped me and upwards of 43 possible carriers just in my family. I have received medical help, referrals, testing, financial assistance and the best part, I have received Panhematin to help control and manage my disease. I could not have done this without the APF it has helped many members with there own Porphyria and I have learned so much and I have a voice that I can share fell welcomed and supported by this non-profit group. Porphyria is very rare an Orphan Disease sometimes you have to fight to get help and the APF has continued to show support, enroll me in programs such as short and long term Porhyria studies and so much more.

5 Lila M.

General Member of the Public

Rating: 2

The American Porphyria Foundation is primarily a Research organization. They appear to be singularly involved with fundraising and organization for porphyria research, and with participation in clinical trials. At this time, according to information on their website and persons associated with the APF, the APF provides no direct patient support. That would include any of the following areas: Diagnosis cost assistance, Medication cost assistance, Primary physician referrals, Home Care guidelines or referrals, Patient Advocate registry, guidelines or referrals, Care-giver support, Family support, or Patient support. The volunteers of the APF do operate a few forums on social media sites, yet family members and some patients feel unwelcomed in these groups.

1

Client Served

Rating: 5

The American Porphyria Foundation is one of the few Advocates for those living with the Rare Condition Porphyria. They work tirelessly on the behalf of Porphyria patients. They have a great reputation with the FDA, Congress and the Medical Community. All there information is reviewed by Doctors and Researchers that are considered to be among the best in their field. 30 years as an Organization. They are Incredible.