Thursday, August 9, 2018

Porphyria Post

Porphyria Post

The APF is fighting hard for Scenesse to be granted Priority Review status at the FDA. This is the fastest possible review process for a new treatment through the FDA. Scenesse has proven to be an effective treatment with nearly 6,700 worldwide SAFE doses implanted for the treatment of EPP. There IS no current FDA-approved treatment available for this extremely painful phototoxic disease.
As a TEAM we are much more effective.
Please use this Facebook frame to show your support for our cause and to help gain attention to the much needed Priority Review and approval of the EPP treatment Scenesse!

Here is the link to the camera effect.
www.facebook.com/fbcameraeffects/tryit/927609194092504/

Harvoni Study - PCT

Do you have PCT? Are you interested in participating in research? Do you have Hepatitis C? If you answered YES to these questions, this is for you.
We need YOU for a clinical trial!
The purpose of this clinical trial is to assess whether Harvoni alone is an effective therapy in active PCT patients with Chronic Hepatitis C.
Who can participate?
Adult patients with PCT who also have Hepatitis C
If you are interested in participating please contact Edrin Williams, Director of Patient Services at the APF office at 301.347.7166 for additional information.

EPP Clinical Trials – Participants Needed!
Please contact the APF on 866-APF-3635 to request information on these new clinical trials. There are six study sites across the US that need your participation. Do you want a new treatment for EPP? – then come be part of the solution.
There are 4 Sites that are currently accepting patients:
Mount Sinai - New York City, NY
Wake Forest Baptist - Winston Salem, NC
University of Miami - Miami, FL
University of Texas Medical Branch - Galveston, TX
Sites to open soon:
University of California San Francisco - San Francisco, CA
University of Utah - Salt Lake City, UT
We need your participation! Contact us today!
Remember…Research is the Key to Your Cure!! Every step along the way is important.

Light the Moment 2018
The Stuhlsatz Family was the recipient of Light the Moment 2018. We are excited to share with you that they are headed to Disney World this week! The Shadow Jumpers team worked very hard to make sure that they have an experience of a lifetime. Stay tuned for more once they return from this exciting trip.

Safe/Unsafe Drug Questionnaire for the Acute Porphyrias (AIP,VP,HCP & ADP)
The APF is collaborating with researchers to identify new safe and unsafe drugs. We need your help. Are you experiencing adverse effects with any of your new medications? If so, please let us know in the questionnaire below how it affected you. We will share these results with our team of renowned Porphyria experts/researchers. They are in the process of updating our safe and unsafe drug list for the acute porphyrias. Your donations will help us educate physicians about the dangerous effects of unsafe drugs. Please click on the link below for the Questionnaire.

Wednesday, August 8, 2018

Pub MD specials on each type of Porphyria Click on the link



1.
Frusciante V, Ferrari C, Totaro M, Valle G, Guida CC, Aucella F, Caputo P, Rubini G.
Hell J Nucl Med. 2018 Jan-Apr;21(1):43-47.
PMID:
 
29705816
 
Free Article
2.
Succi IB, Pôrto LC, Domingues PMGDRP, Fonseca JCM.
An Bras Dermatol. 2018 Jan-Feb;93(1):148-150. doi: 10.1590/abd1806-4841.20186666.
PMID:
 
29641722
 
Free PMC Article
3.
Takata K, Shakado S, Sakamoto K, Fukuda H, Yamauchi R, Fukuda S, Kunimoto H, Umeda K, Tanaka T, Yokoyama K, Morihara D, Takeyama Y, Irie M, Sakisaka S.
Clin J Gastroenterol. 2017 Oct;10(5):459-463. doi: 10.1007/s12328-017-0772-x. Epub 2017 Sep 7.
PMID:
 
28884440
4.
Bissell DM, Anderson KE, Bonkovsky HL.
N Engl J Med. 2017 Aug 31;377(9):862-872. doi: 10.1056/NEJMra1608634. Review. No abstract available.
PMID:
 
28854095
5.
6.
Callen JP.
Am J Med Sci. 2017 Jul;354(1):5-6. doi: 10.1016/j.amjms.2017.06.009. No abstract available.
PMID:
 
28755733
7.
Baravelli CM, Sandberg S, Aarsand AK, Nilsen RM, Tollånes MC.
J Intern Med. 2017 Sep;282(3):229-240. doi: 10.1111/joim.12646. Epub 2017 Jul 20.
PMID:
 
28730628
8.
Olivier P, Van Melkebeke D, Honoré PJ, Defreyne L, Hemelsoet D.
Eur J Neurol. 2017 Sep;24(9):1183-1187. doi: 10.1111/ene.13347. Epub 2017 Jul 10.
PMID:
 
28695690
9.
Gomez-Gomez A, Marcos J, Aguilera P, To-Figueras J, Pozo OJ.
J Chromatogr B Analyt Technol Biomed Life Sci. 2017 Aug 15;1060:347-354. doi: 10.1016/j.jchromb.2017.06.030. Epub 2017 Jun 19.
PMID:
 
28666226
10.
Balwani M, Wang B, Anderson KE, Bloomer JR, Bissell DM, Bonkovsky HL, Phillips JD, Desnick RJ; Porphyrias Consortium of the Rare Diseases Clinical Research Network.
Hepatology. 2017 Oct;66(4):1314-1322. doi: 10.1002/hep.29313. Epub 2017 Sep 4. Review.
PMID:
 
28605040
11.
Babar MU, Hakeem H, Khan S.
BMJ Case Rep. 2017 Mar 27;2017. pii: bcr2016219105. doi: 10.1136/bcr-2016-219105.
PMID:
 
28348263
12.
Blouin JM, Bernardo-Seisdedos G, Sasso E, Esteve J, Ged C, Lalanne M, Sanz-Parra A, Urquiza P, de Verneuil H, Millet O, Richard E.
Hum Mol Genet. 2017 Apr 15;26(8):1565-1576. doi: 10.1093/hmg/ddx067.
PMID:
 
28334762
13.
Howard M, Hall A, Ramsay D.
Dermatol Online J. 2017 Feb 15;23(2). pii: 13030/qt10n7k90g. Review.
PMID:
 
28329491
14.
Handler NS, Handler MZ, Stephany MP, Handler GA, Schwartz RA.
Int J Dermatol. 2017 Jun;56(6):e106-e117. doi: 10.1111/ijd.13580. Epub 2017 Mar 21. Review.
PMID:
 
28321838
15.
Takata T, Kume K, Kokudo Y, Ikeda K, Kamada M, Touge T, Deguchi K, Masaki T.
Intern Med. 2017;56(6):713-717. doi: 10.2169/internalmedicine.56.7654. Epub 2017 Mar 17.
PMID:
 
28321076
 
Free PMC Article
16.
Abdelmaksoud A.
Dermatol Ther. 2017 May;30(3). doi: 10.1111/dth.12466. Epub 2017 Jan 30. No abstract available.
PMID:
 
28133909
17.
Nishiyama M, Sakamoto K, Shinagawa Y, Morita A, Urakawa H, Fujimitsu R, Shakado H, Hamada Y, Yoshimitsu K.
Abdom Radiol (NY). 2017 Jul;42(7):1813-1818. doi: 10.1007/s00261-017-1056-0.
PMID:
 
28130583
18.
Manceau H, Gouya L, Puy H.
Curr Opin Hematol. 2017 May;24(3):198-207. doi: 10.1097/MOH.0000000000000330. Review.
PMID:
 
28118224
19.
Tchernitchko D, Tavernier Q, Lamoril J, Schmitt C, Talbi N, Lyoumi S, Robreau AM, Karim Z, Gouya L, Thervet E, Karras A, Puy H, Pallet N.
J Am Soc Nephrol. 2017 Jun;28(6):1924-1932. doi: 10.1681/ASN.2016080918. Epub 2016 Dec 28.
PMID:
 
28031405
 
Free PMC Article
20.
Yang J, Chen Q, Yang H, Hua B, Zhu T, Zhao Y, Zhu H, Yu X, Zhang L, Zhou Z.
Biomed Res Int. 2016;2016:3927635. doi: 10.1155/2016/3927635. Epub 2016 Nov 29.
PMID:
 
28025645
 
Free PMC Article

Wednesday, August 1, 2018

Porphyria Post

Porphyria Post
Panhematin Study
Do you have AIP, VP or HCP? Are you interested in participating in research? If so, we are recruiting volunteers for the Panhematin Study.

Our researchers need people to volunteer for the Panhematin study. Completing this study will help prevent insurance companies from not paying for this treatment.

The purpose of this study is to determine if Panhematin is safe and effective for prevention of acute attacks of porphyria.

Please contact Edrin at the APF office (301.347.7166) if you are interested in participating.
EPP on Fox News - Thursday, August 2nd at 10pm!
Camp Sundown 2018 was extra special for our porphyria community - the first week was dedicated to children with EPP. Fox News caught wind of this special event and came to see what camp and living with photosensitivity is all about.  Tune in tomorrow night - August 2nd - at 10pm to see the segment. The APF will have access after it airs and we will be sure to share with all of you.
Hearing Hoofbeats, Thinking Zebras
Click on the link below to view a story by our patient member Eryn Sallee. Thank you, Eryn, for sharing your story!


EPP Clinical Trials – Participants Needed!
Please contact the APF on 866-APF-3635 to request information on these new clinical trials. There are seven study sites across the US that need your participation. Do you want a new treatment for EPP? – then come be part of the solution.  

Remember…Research is the Key to Your Cure!! Every step along the way is important.
Harvoni Study - PCT
Do you have PCT? Are you interested in participating in research? Do you have Hepatitis C? If you answered YES to these questions, this is for you.

We need YOU for a clinical trial!
 
The purpose of this clinical trial is to assess whether Harvoni alone is an effective therapy in active PCT patients with Chronic Hepatitis C.

Who can participate?

·    Adult patients with PCT who also have Hepatitis C

If you are interested in participating please contact Edrin Williams, Director of Patient Services at the APF office at 301.347.7166 for additional information.

Get Involved
Contact Information

Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to porphyrus@porphyriafoundation.com
American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org
STAY CONNECTED
"Remember....Research is the Key to Your Cure!"




Porphyria Post

Porphyria Post # ApproveScenesse The APF is fighting hard for Scenesse to be granted Priority Review status at the FDA. This is the f...