The Children’s Rare Disease Network will create greater public awareness for rare disease, while connecting, educating and empowering the millions of families and caregivers affected, through an online community and collaborative portal.

The Global Genes Project is a grassroots effort with a simple goal: Increase awareness for the prevalence of rare diseases and help those affected by them. While each disease may be rare when considered by itself, together they negatively impact the lives of millions of children and adults.

MarbleRoad is a proud partner of the CureTheProcess Campaign of the Kakkis EveryLife Foundation. The campaign strives to inspire science-driven public policy to increase the predictability of the regulatory process for rare disease treatments. We support their goal to give even the most rare diseases access to the accelerated approval process and fulfill more completely the original intentions of the Orphan Drug Act.

Vivanista is the go-to community for philanthropic living and giving.Vivanista has developed the first-ever repository of best practices in fundraising as well as a robust library of essential tools and templates to elevate the success of charitable events.  As a result, more money is generated for nonprofit organizations and greater good is contributed to society.

  • Vivanista is a community of philanthropically-minded individuals
  • Vivanista incites members to share fundraising best practices
  • Vivanista provides the easy-to-use tools for event promotion
  • Vivanista provides allows organizations and individuals to leverage their volunteer experience into future endeavors

LCKM@ was founded by Stephen Benzel, Sean Meredith, and Julie Johnson after they watched two lovely little girls fight leukemia. One of them did not survive [rare acute lymphoblastic leukemia], but the other is conquering the disease as you read this. LCKM@ brings together artists to support childhood cancer research.

You can think of us as a tree of creativity, with branches joining together indie musicians, charitable organizations, and t-shirts with a fashionable punch.  We’re a non-profit Montreal based organization dedicated to bringing our customers the finest of quality, originality, and philanthropy. We seek out only the coolest of cool artists, collaborate with them to design awesomely awesome tee-shirts, and give all the prettiest of pretty profits to charities of the artists’ choice.

Genzyme’s Patient Advocacy Leadership Awards (PAL Awards) is a global awards program for non-profit organizations that serve the lysosomal storage disorder (LSD) patient community. The PAL Awards program seeks to spark innovation in disease awareness programs and patient support initiatives around the world.

As an independent voice in the lysosomal storage disease community, patient organizations play a vital role in providing leadership, resources and access to care and support for patients and their families.  We believe supporting their work is critical to optimizing patient care and meeting the ever-growing needs of the LSD community.  Having partnered with patient organizations for more than 25 years, we are pleased to introduce Genzyme’s newest program, the PAL Awards.  Learn more. 

 

Please join us in helping raise money for MarbleRoad and explore a brand new family caregiver support program at the same time.  It’s simple – it’s free and it will help us reach more families with our valued services.  Here’s all you do:

1)      Click this link: www.caregivervillage.com/support/MarbleRoad.   Your registration will then count toward our fundraising program.

2)      Join Caregiver Village.  It’s free for one year during launch (and less than $5 per month for people who join following the launch period).

3)      Pass it on!  Please forward this email to people you know who might benefit.  (Note: If you’d like to add a linked image to your own blog or email you can get the html code link at www.caregivervillage.com/support/charity.) 

EP Mission Statement
To Develop, Translate, and Share Information as Tools for Positive Change for the Special Needs Community

About EP Global Communications, Inc. 
EP Global Communications (OTC Bulletin Board: EPGL) is a 40-year-old, award-winning publishing and communications company. EP provides practical advice and the most up-to-date educational information for families of children and adults with disabilities and special healthcare needs as well as to the physicians, allied health care professionals, and educational professionals who are involved in their care and development.

EP uses a multi-media approach to disseminate information through the following methods: its monthly print publication, EP (Exceptional Parent) magazine; its Website (www.eparent.com); clinical custom communications projects; the EP Bookstore(www.epbookstore.com) which offers books, DVDs, and CDs on a wide range of disability related subjects; and online, interactive CME accredited seminars and teleconferences on a wide range of special needs topics (www.epliveonline.com) . 

Share |