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NORD News for October - The Voice of the Community

OCTOBER 15, 2016
Guest post by NORD

NORD Staff Members Join Running for Rare Team in Raising Funds for Undiagnosed Patients

Three members of the NORD staff and the son of a staff member ran with the Running for Rare Team to raise funds for undiagnosed patients at the recent Eversource Hartford (CT) Marathon. Staff members Nekeya George, Brittany Hoffman and Ross Martin completed the half-marathon, as did David Andrews, son of Catherine Blansfield, RN, of the NORD staff. Two members of the Running for Rare Team completed the full marathon and several others completed the half-marathon.
 


Other NORD staff members and the runners’ patient partners provided support and encouragement from the sidelines. Funds raised by the team support the NORD/Undiagnosed Diseases Network (UDN) Patient Assistance Program. This program provides financial assistance to cover the cost of diagnostic testing for applicants to the Undiagnosed Diseases Network.
 


The Running for Rare Team will be running additional marathons around the U.S. throughout the year. All funds raised by the team support the NORD assistance program for undiagnosed patients. To inquire about running with the team, serving as a patient partner, or making a donation, write to runningteam@rarediseases.org.


Letters of Intent Are Due October 21 for NORD Research Grants

The abstract submission deadline has been extended to Oct. 21 for NORD’s RFPs for grants to study the following diseases:
  • Alveolar capillary dysplasia with misalignment of the pulmonary veins
  • Appendix cancer and pseudomyxoma peritonei
  • Autoimmune polyglandular syndrome type 1
  • Homocystinuria
  • Malonic aciduria
  • Stiff person syndrome
 
Information about these grants and funding opportunities being provided by several NORD member organizations for the study of other rare diseases may be found on the NORD website.

550 Participants Registered for NORD Rare Diseases & Orphan Products Breakthrough Summit

Keynoters will include Food and Drug Administration (FDA) Commissioner Robert Califf, MD; Kristen Gray, mother of two children affected by Batten disease and wife of movie producer Gordon Gray; and Washington political reporter Kate Rawson at the NORD Rare Diseases and Orphan Products Breakthrough Summit on October 17-18 in Arlington, VA. With its largest registration ever, the Summit will draw together patient advocates, researchers, regulatory officials and others working to advance diagnosis and treatment for people with rare diseases.

FDA Seeks Nominations for Patient Representatives

FDA is requesting nominations for patient representatives to serve as voting members of its Patient Engagement Advisory Committee. For information about how to nominate yourself or another individual, read the Federal Register notice. 
 

NEWS FROM NORD MEMBER ORGANIZATIONS

AMENSupport
A Multiple Endocrine Neoplasia Patient and Family Seminar will take place at Northwestern University on October 22.
 
Alport Syndrome Foundation
Applications for the 2016 Paul Silver Tribute Award are now available. This award for Alport syndrome kidney patients ages 16 to 22 years old is aimed at enriching the lives of young patients by helping support education, completion of a project, or pursuing an activity that will enrich the applicant’s life. Applications are available online and are due Nov. 4.
 
Pulmonary Hypertension Association
PHA on the Road is a free, day-long education and support program for patients and their family members across the US living with pulmonary hypertension. The program is patient-focused, interactive and education. The next upcoming forum in this series will take place on Saturday, Nov. 19 in Tampa, FL.
 
Transverse Myelitis Association
Every day for 100 days, the Transverse Myelitis Association is featuring a story of a person touched by neuromyelitis optica spectrum disorder, acute disseminated encephalomyelitis or transverse myelitis, as part of an awareness campaign. These rare autoimmune disorders affect the brain, spinal cord, and/or optic nerve.
 
MDS Foundation
The MDS Foundation will host Patient and Family/Caregiver Forums in Denver, CO, and Fort Lee, NJ, on October 29. Registration may be done online or by calling Janice Butchko at (800) 637-0839 ext. 208. The Foundation also is seeking a full-time Director of Development. Inquiries may be directed to tiraca@mds-foundation.org with Director of Development in the subject line.
 
Fat Disorders Research Society
The Fat Disorders Research has published an online photo essay on lipedema and Dercum’s disease.
 
American Partnership for Eosinophilic Disorders (APFED)
APFED is accepting applications for its 2017 Hope Pilot Grant Award. Interested applicants are invited to submit a letter of intent by Oct. 28. The $100,000 two-year grant was established to allow investigators to initiate new projects related to eosinophil-associated disease. Successful applications will focus on the development of new ideas that are likely to lead to future external funding.
 
National PKU Alliance
The National PKU Alliance has announced its 2017 NPKUA funding opportunities. The Research Grant Program funds pre-clinical, translational, and clinical studies. The Post Doc Fellowship Program encourages PKU-related research in young investigators. 


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