National Gaucher Foundation - Gaucher Disease
Slideshow Image 1
Slideshow Image 2
Slideshow Image 3

Pfizer Reaches Out to Russian Jewish Community to Educate About Gaucher Disease, the Most Common Jewish Genetic Disorder

Pfizer to Support the Russian American Foundation’s Russian Heritage Month® and Raise Awareness of Important Health Topic

NEW YORK - Pfizer Inc. announced they will be supporting the 11th Annual Russian Heritage Month®, a cultural community-awareness event that is presented by the Russian American Foundation, in cooperation with the City of New York and Mayor Michael R. Bloomberg. Pfizer is partnering with the Russian American Foundation to provide educational information to raise awareness of Gaucher disease, the most common Jewish genetic disorder, to the Russian Jewish community. Many Russian Jews are of Ashkenazi Jewish descent, a group that is at risk for 19 life-altering Jewish genetic disorders, including Gaucher disease.

“Pfizer is committed to educating the Jewish community about genetic disorders, such as Gaucher disease,” said William Kennally, President, North America, Established Products, Pfizer. “Partnering with the Russian American Foundation provides a unique opportunity to reach people who are at risk for these rare disorders and provide them with important health information.”

One in 4 Jewish people is a carrier for at least one of 19 Jewish genetic disorders. As many as 1 in 10 people of Ashkenazi Jewish descent are carriers for Gaucher.

“It is important for Russian Jews to be aware of their risk for Gaucher disease and the 19 Jewish genetic disorders,” said Asya Benin, MD, internal medicine specialist, Brooklyn, N.Y. “We want to help the community learn more about this important health issue and ensure they know how they can be screened to find out if they are a carrier for one of these disorders.”

Pfizer, which introduced ELELYSO™ (taliglucerase alfa) for injection for the treatment of adults with Type 1 Gaucher disease in May 2012 with Israel-based Protalix BioTherapeutics, is committed to helping people living with Gaucher disease. The company has created a specialized program called Gaucher Personal Support (GPS), which is a one-stop resource for support with ELELYSO and people with Gaucher disease. GPS staffs a dedicated team of health care specialists who are available 24/7 to help Gaucher disease patients and their families with reimbursement assistance, facilitate locating infusion services, and provide 2 ongoing pharmacy support. For more information on ELELYSO and Pfizer’s commitment to Gaucher disease, please visit

About Jewish Genetic Disorders
There are a number of serious rare genetic disorders for which persons of Jewish heritage are more likely to be carriers than the general population. These diseases include: Bloom’s Syndrome, Canavan Disease, Cystic Fibrosis, Familial Dysautonomia, Familial Hyperinsulinism, Fanconi Anemia Type C, Gaucher Disease Type 1, Glycogen Storage Disorder Type1A, Joubert Syndrome Type 2, Lipoamide Dehydrogenase Deficiency (E3), Maple Syrup Urine Disease, Mucolipidosis Type 4, Nemaline Myopathy, Niemann-Pick Disease Type A, Spinal Muscular Atrophy, Tay-Sachs Disease, Usher Syndrome Type 3, Usher Syndrome Type 1, and Walker Warbug Syndrome.

About Gaucher Disease
Gaucher disease is an inherited lysosomal storage disorder in humans that affects an estimated 10,000 people worldwide and can cause severe and debilitating symptoms, including: enlargement of the liver and spleen, various forms of bone disease, easy bruising, and anemia (low hemoglobin). Gaucher disease consists of varying degrees of severity; it has been sub-divided into three subtypes – Types 1, 2, and 3 – according to the presence or absence of neurological involvement. Type 1, the most common, is found at a higher frequency among individuals who are of Ashkenazi Jewish ancestry.

ELELYSO™ (taliglucerase alfa) for injection is a hydrolytic lysosomal glucocerebroside-specific enzyme indicated for long-term enzyme replacement therapy (ERT) for adults with a confirmed diagnosis of Type 1 Gaucher disease.

For full prescribing information, visit

Important Safety Information
As with any intravenous protein medicine, like enzyme replacement therapy (ERT), severe allergic reactions (including anaphylaxis) have been observed in patients treated with ELELYSO. If this occurs, ELELYSO should be immediately discontinued, and appropriate 3 medical treatment should be initiated. Patients who have experienced anaphylaxis to ELELYSO or another ERT should proceed with caution upon retreatment.

In addition, infusion reactions (including allergic reactions)—defined as a reaction occurring within 24 hours of the infusion—were the most commonly observed reactions to ELELYSO. The most commonly observed infusion reactions were headache, chest pain or discomfort, weakness, fatigue, hives, abnormal redness of the skin, increased blood pressure, back or joint pain, and flushing. Other infusion or allergic reactions included swelling of the face, mouth, and/or throat; wheezing; shortness of breath; skin color turning blue; coughing; and low blood pressure. Most of these reactions were mild and did not require treatment.

Management of infusion reactions is based on the type and severity of the reaction. Your doctor may manage infusion reactions by temporarily stopping the infusion, slowing the infusion rate, or treating with medications such as an antihistamine and/or a fever reducer. Treatment with antihistamines and/or corticosteroids prior to infusion with ELELYSO may prevent these reactions.

Other common adverse reactions observed were upper respiratory tract infections, throat infection, flu, urinary tract infection, and pain in extremities.

As with all therapeutic proteins, including ERTs, there is a possibility of developing antibodies to ELELYSO. However, it is currently unclear whether this has an impact on the clinical response or adverse reactions. Patients with an immune response to other ERTs who are switching to ELELYSO should continue to be monitored for antibodies. Comparison of the frequency of antibodies across ERTs may be misleading. Patients who have developed infusion or immune reactions with ELELYSO or with another ERT should be monitored for antidrug antibodies when being treated with ELELYSO.

If you are pregnant, or plan to become pregnant, you should talk to your doctor about potential benefits and risks.

The health information contained herein is provided for educational purposes only and is not intended to replace discussions with a health care provider. All decisions regarding patient care must be made with a health care provider, considering the unique characteristics of the patient. 4 This product information is intended only for residents of the United States.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit, or call 1-800-FDA-1088.

Pfizer Inc: Working together for a healthier world™
At Pfizer, we apply science and our global resources to improve health and well-being at every stage of life. We strive to set the standard for quality, safety and value in the discovery, development and manufacturing of medicines for people and animals. Our diversified global health care portfolio includes human and animal biologic and small molecule medicines and vaccines, as well as nutritional products and many of the world’s best-known consumer products. Every day, Pfizer colleagues work across developed and emerging markets to advance wellness, prevention, treatments and cures that challenge the most feared diseases of our time. Consistent with our responsibility as the world’s leading biopharmaceutical company, we also collaborate with health care providers, governments and local communities to support and expand access to reliable, affordable health care around the world. For more than 150 years, Pfizer has worked to make a difference for all who rely on us. To learn more about our commitments visit

About Russian Heritage Month
Russian Heritage Month takes place every year in June, and consists of a month-long series of events which celebrate and honor the rich diversity of cultural traditions brought to this country from the various regions of the former Soviet Union. The events, which take place throughout New York, encompass public performances, exhibits, artist collaborations, sporting competitions and promote cross-community awareness as well as a valuable dialogue between people and cultures. The Annual Russian Heritage Festival®, which takes place in Brooklyn, NY, showcases the heritage and traditions of New York’s Russian speaking community.

About the Russian American Foundation
The Russian American Foundation was founded in 1997 to encourage interest in and understanding of Russian heritage among all communities in the U.S., as well as to promote reciprocal interest in and understanding of American heritage among global Russian-speaking communities.