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Showing posts from July, 2012

Global Genes! Can we count on you? RARE Advocacy

A major challenge facing the rare and genetic disease community is the lack of a forum for significant, open, and regular communication on common issues of broad interest. While each rare disease is unique from a scientific standpoint there are many other issues which span the entire rare community - resources, policy, funding, research, patient quality of life, clinical care, payers, etc. Global Genes | R.A.R.E will hold a Patient Advocacy Summit on September 28, 2012, from 9 a.m. to 3 p.m. at the Balboa Bay Club & Resort. Patient advocates will engage, learn, and discuss a variety of topics that directly affect them leading to collaborations that will benefit the entire rare community.Topics of Discussion:RARE Advocacy - You Have the PowerInnovative Technologies & ScienceNew Non-profit Business ModelsBuilding Healthy Rare Disease CommunitiesPublic Communication & Media Engagement The event will be highly interactive. Panels and discussion will be prioritized over formal…

Have YOU signed up YET? WE NEED YOU!

Join the Registry
Join the Porphyria Registry and LET THE GOVERNMENT KNOW THEY MUST PROVIDE FUNDING FOR PORPHYRIA RESEARCH!!!!! To join the Contact Registry, click here to open a page that lists all of the rare disease consortia. Scroll down the page until you come to the Porphyria Consortium and click on your type of porphyria. You will then be asked to complete a simple form including information about the date of your diagnosis, if you know it. If you have copies of your initial diagnostic lab results, you may want to have them handy when you go to the registry website.  Porphyria experts have created this National Porphyria Registry—a type of partnership between doctors and patients— as a way for those with porphyria to share information about their health and treatment so physicians can learn from their experience and use that knowledge to enhance diagnosis, treatment and eventually find a cure for porphyria. It is the best means to prove that there are enough porphyria patients …

Porphyria Education for MDs

Do you have this for your Doctors?The APF promotes comprehensive health care necessary to


manage life with porphyria. We encourage members to call
the office and request a free
Acute Porphyria Physician

Education Kit
for your doctor. Treating physicians can also

get information about consulting a Porphyria specialist on diagnosis
and patient care.

Acute Porphyria Physician Education Kit contents:Diagnosis and Management of the Acute Porphyrias,”



Annals Int Med, March 2005);


APF Brochures
on all of the porphyrias (written by porphyria

experts);Detailed information on

New News from the APF!

NEW at the APFAPF Pain Program

The APF has indicated a new Pain Project to help educate physicians on the extreme pain that many porphyria patients endure.   Because some states have instituted stringent pain prescription policies, the APF has felt it necessary to focus on this issue as part of our physician education program.   We need your input.  Please call or email the APF with your experiences -- good or bad.   Please contact porphyrus@aol.com or contact Desiree at the APF office(713) 266-9617